Tuesday, December 27, 2011

A Holiday Free from Pain

A big concern for me this Christmas was making it through the season pain free. I did everything that I could to keep it that way--I've completely eliminated gluten from my diet (four months strong), I don't drink alcohol, limit caffeine, limit processed sugars, kept lifting to a minimum... but I've got to say, Christmas (or Kwanza or Chanukah--Chag Urim Sameach!) seems to be the perfect storm for chronic pain. I know Christmas has ended, but this entry can be of use for any holiday (like the up and coming New Year) and should help year round.

Both endometriosis and IBD are affected by what one eats. Big time. I wish it was something as harmless as, "you are what you eat"--what I wouldn't give to just turn into a fluffy donut when I eat sugary, glazed, fat pumped wheat. Endo and IBD are both inflammatory diseases, and a big key in managing pain is preventing inflammatory responses, or 'flairs'. Flair triggers can be anything from large quantities of sugar to something as harmless looking as theater popcorn. And there are two things that make figuring out what does/does not cause each of our unique bodies to flair even more difficult: it's more about how the food was made than what's in the food, and everyone is different.

I've read before that endometriosis is a secondary immune system disease--meaning it's a failing in the immune system that keeps our bodies from properly protecting us from natural functions gone wrong (rather than the immune system actually attacking our bodies). IBD is generally viewed as an autoimmune disease (immune system attacks the body). For those of you who may not know, the immune system is largely directed by signals and chemicals that are both endogenous and exogenous to our bodies. This means both what our bodies naturally produce and what we consume as food affect the actions of our immune systems. ( Maybe think of tiny little soldiers and our body giving orders it writes itself and receives from outside officials.)

This places a large burden on most immune disease sufferers. Our concerns around Christmas time are not our weights, our blood pressures, our 'trim, youthful figure'--with everything we eat, we have to make a conscious decision to avoid possible flair triggers. I can't stop the pain, but I can lessen it. I wish my biggest problem was figuring out how to lose weight I gained over Christmas time. I cannot even keep up a healthy weight because, despite my love affair with cooking, I often avoid eating because I am frightened that something I consume may result in a flair. I've made entire meals where I did not eat a single bite. Not to mention, finding affordable meals that contain none of my flair triggers has become an arduous task.

And no one wishes to be the difficult one around Christmas time. No one wants to be 'that person'--the person people struggle to invite out or over for dinner parties because of their difficult food requirements. Even back in my vegetarian days (I'm now poultry and fish friendly--in my stomach), but even in my time as a full fledged vegetarian, I would occasionally eat meat so as not to insult or inconvenience a dinner host or friendly gesture. But now I don't have to worry about upholding my ideals. I have to worry about constantly fighting disease by watching my diet! I can't afford to be polite!

How does one do this? How can you avoid being the obnoxious, unfeasible dinner guest without jeopardizing your health? Endometriosis is not exactly well known, and I will often say, "I"m sorry, I've got Crohn's" to avoid eating something because people will be less offended (for some inexplicable reason) from that than if I say, "I'm sorry, I've got Endometriosis." I can't answer why others think this way; however, I've found some answers to make things easier for myself. Maybe some of my friends/readers can add some ideas of their own. (These ideas are more for endometriosis than IBD, but I will say that what helps endometriosis (diet wise) often helps IBD)

1. When going out, try to load up on disease friendly foods first: I don't mind not getting to eat at the same time as everyone else (I just try to minimize the obvious as much as possible) but that becomes much more difficult when I'm starved. I'm less likely to crack at a party or outing if I eat some apples & peanut butter, rice, oatmeal, etc. BEFORE I go out. I try to never leave my house on an empty stomach. I feel MUCH better if I eat before I leave. That way, even if the only thing I can munch on is salad, I'll still be okay. I have a better time and I'm more enjoyable to be around.

2. Pack disease friendly snacks: There are times when my body cannot last a whole outing without food. And sometimes, the worst times, there is NOTHING available for me to eat. And starving myself doesn't work too well. My weak immune system is linked to a rubbish endocrine system, and I have trouble maintaining glucose levels in my body (i.e., I'm hypoglycemic). To help make outings easier, I try to always keep a couple gluten free meal bars in my purse. This can bridge the hunger gap.

 4. Do not fall to temptation: Sometimes those brownies, cookies, slices of cake, whatever they are, look soooo good. Ignoring food can be hard, especially for women with endometriosis. Hormones can make you crave sweets, and I crave sweets a lot! Unfortunately, whenever I do cave in, I end up swollen, in pain, and wishing I had not. Try to be strong! If impossible, make sure to at least eat unprocessed sweets and to keep quantities small. Often a great compromise is dark, organic chocolate. It satiates in small amounts and satisfies cravings with lower negative consequences.

5. Organic, organic, organic: Again, this is for food that you do eat and those times you give into temptation. I love sweets, and I love to bake, so completely avoiding sweets around the holidays is impossible. So my rule of thumb is I can only have what I make myself. This is because everything I make is organic. I make my pumpkin pies from pumpkins, my cookies never come from a box, and I have no idea why anyone ever decided crisco could be classified as food (it was originally invented as a candle wax alternative). This way, I know each and every ingredient, can limit what is bad for me, and make sure I do not used processed foods with additives. Many additives act as estrogen agonists and food processing methods can leave my stomach... unhappy. When I eat preservative free, gluten free, sulphite free, etc. free foods--I feel better. Even if I did have more sugar than I should have.

6. Remember, each body is different: finding what is okay for one body and bad for the next is not an easy task. Everyone is different and, because these are immune diseases, there is no 'one cure fits all'. It's all about how your body reacts individually to different things. To find which foods are okay and which are not takes a long long time. And around the holidays, when you're eating a lot of different things, discovering what works and what doesn't becomes even harder. The best thing to do is take is slow and keep a food journal. Every hour mark what was consumed and how you felt. This is the easiest way to pick up patterns from what one eats. But be patient and remember that you may be able to eat things that other patients may not.

7. Try not to stress too much: as important as it is to watch your diet and avoid possible triggers, it's not worth it too lose oneself in the fervor of sticking with a diet. One must proceed slowly when switching to a new food regiment. For example, when I went gluten free, I allowed myself great flexibility that first month and gradually reduced the amount of gluten I consumed for several weeks. This kept eating from being a negative experience and made it a more comfortable transition. Even if the food causes pain, stress causes more pain. Stress is a huge hamper on the immune system (I should know, I study neuropsychology!). So try to enjoy the fun holidays bring and if you're new to a endometriosis or IBD diet, try and take it slow!

8. Be okay with people being mad at you/not liking you: the last bit of advice I can give is sometimes you will have to be okay with offending someone by not eating something. When you have a disease, one greatly affected by your diet, no one else has the right to dictate what you eat. You will at times face sneers, jeers, out right judgement and rudeness, but stay strong. As long as you are courteous and not flamboyant with refusing certain foods from time to time, no one has the right to judge you or frown upon your diet. So when people do, take the high road, ignore them, and just remind yourself that they don't understand. Luckily, most people do tend to understand and will support you through it! (Thank you to all of my friends/family who have prepared special foods on my behalf and not guilting me for my neediness!)

There are specific dietary recommendations I could give this holiday seasons, but truly those are everywhere (i.e. all over the internet). It seems more often that those who graciously advise what to eat/avoid refrain from advising people how to actually go about inconvenient (and often unrealistic) dietary constraints. Someday I will add my own blog entry to that sea of online dietary advice. But, for today, I merely seek to give recommendations on how to make the holidays a little more bearable and make it easier to stick to one's special diet. Good luck!

Please, if you have a moment, let me know how you maintain your special dietary needs. Merry Christmas, Happy Kwanza, and Chag Urim Sameach!

Thursday, December 22, 2011

The Benefits of Biking! (and yoga ;)

Biked to the annual Holi Festival at a local Krishna Temple
I've planned to do this post many times. I've written it up and deleted it, several times. In fact, I even did it yesterday (in a spontaneous burst) which came out a bit gargled and difficult to read... so I'm rehashing it a bit. Mostly for the reason that despite this post not being quite as thoughtful as my normal writing, it is still important. In fact, it's got some bare-bones advice that really has made a difference in my life. So here we go.

When I first wanted to do this post, I wanted to do more research. I stuck to my neuro-roots and I set out to read various articles that supported or opposed the theory that exercise can reduce endometriosis symptoms. I wanted to be my science/argumentative self. But then I realized that the joys and benefits I get out of exercise have their benefits with or without the science proof! I know, scary for a nerd like me. Research is not the important factor here. Instead, I just want to tell my experience and, maybe later, in another post, I'll share some of the research and readings I've done to make me have unquestioning faith in these activities.

First off, if you have endometriosis, know someone with endometriosis, might know someone with endometriosis--listen up! Exercise is a VITAL part of maintaining my health. True, exercise is a vital part of maintaining anyone's health. It makes a life span longer in years with higher quality years. A favorite comic strip of mine shows a patient at a doctor's appointment, showing the major flaw of a common complaint "I don't have time to exercise." The truth is, everyone should try and make time to exercise. The benefits of exercise for health are so multidimensional that there is no way I could cover them in a single blog post. However, one of the great things about exercise, in relation to endometriosis specifically, is that it can be a great therapeutic tool for endometriosis.

Exercise has been a VITAL part of maintaining my pain. Much of the pain that comes from endometriosis is scar tissue and concentrated endometriosis implants secreting inflammatory chemicals. When you exercise and move around, it helps keep that awful nonsense from forming. Well, more accurately, it helps prevent it from aggregating in large clumps. Scar tissue comes from the build up of endometrial cells in places that it really should not grow, causing an inflammatory response. By moving around excessively, one can help prevent that concentration from remaining stagnant and increasing to the larger, endometrial implant size.

My personal favorite forms of exercise are biking and yoga. Cycling moves my legs quite a bit and shifts around my lower pelvic region. This is a desirable goal for me, as the light movements can, over time, break up scar tissue and implants that concentrate there. My most large/painful concentrations of endometrial implants are on/in my uterus ligaments. Often any movement (like walking/lifting) hurts me. However, by forcing lots of rhythmical and steady movement in concentrated time blocks of 20-90 minutes, it forces a lot of motion and shifting in those ligaments and helps keep the pain from getting out of control. Sometimes I have been in tears after cycling regiments, but I try to do at least 20 minutes every day. I want to make it as difficult as possible for endometrial implants to hang out in my abdominal and pelvic cavities. In the long run, my pain is much better when I reliably cycle.

Now for yoga... what an amazing form of exercise! It is impossible for me to express what Vinyasa Yoga has done for my endometriosis pain. I admit I am still in some level of pain every day (some days worst than others). But that pain is better managed and more tolerable when I consistently perform daily yoga routines. Vinyasa Yoga is a very health focused style of yoga. It is my favorite form and someday I hope to be a licensed Yoga instructor for this style of Yoga specifically.  The stretching, breathing, motions, and rhythmical flow of Vinyasa Yoga is amazing for ones health. Check it out, take a class. It's not the Americanized Yoga that has turned Yoga into Pilates. It's good for ones health, lungs, heart, muscles, and... of course... endometriosis!

Concerning Endometriosis, Yoga has much more benefit beyond the exercise/stretching that most exercises provide for inflammatory diseases. It's primary benefit is in the reduction of pain experience. Yoga promotes relaxation and soothing of tension. A lot pain for endometriosis is, to put it simply, from inflamed, agitated, and often tugged muscle tissue tensing up and neurons signaling a consequential pain experience. The soothing nature of the breathing/poses/concentration of yoga help to reduce tension and relax the muscles/organs of the body. I like to think of it as a reset button. Additionally, Yoga helps to manage the actual sensation of pain. It can stabilize the pain signaling coming from the body in relation to endometriosis (helping to regulate pain sensation and reduce spontaneous or over-active signaling) and it can encourage the body to release natural painkillers.

So yes, short entry (and a bit bungled to be truthful), but I just wanted to say: if you have Endometriosis, do Yoga and ride a bike! And if you don't have Endometriosis... do Yoga and ride a bike!

Merry Christmas, Happy Hanuka, Happy Kwanza, happy Winter Solstice...  whatever you celebrate, good will to all and I personally will enjoy celebrating family and the birth of Christ myself! (And I'm particularly grateful for that... I was going to have a surgery this weekend and dodged that bullet! Yey!)

Tuesday, December 20, 2011

The Blessings that come from Struggles

Note: This post was imported from the original blog this site is based on. It is a personal account of my experience and is not very relevant to the current website. I have kept it out of respect to the journey that led me here. 

This has been a pretty wild week for me, with both good and bad, but until I sort through all the madness of it, I'm going to keep my medical issues to myself for today. For good, I did get to take a break and go sledding! But there was bad too... well, maybe. I want to wait for biopsies and what not before I report anything! More what I want to write about today is something I've been sorting through for months. It's kind of personal, but something I think others and myself gain strength from talking/writing/hearing/reading about. I admit I am a pretty spiritual individual, and your beliefs may differ from mine. But I think that this is universally applicable, no matter your faith.

When my life first started really falling apart, from personal and medical trials, to when I had to drop out of college after already taking a semester off for medical leave, two weeks before finals, after working so hard, that I was in so much pain that I could not move--there was one night that was really, really bad. I could not understand why I had to go through so much pain. I felt like I was a good, caring person, who tried to help others, who wanted to put good into the world, and here I was being massacred by things my body and others had done to me. It was awful. I got in a hot shower, tried to calm down, but just ended up curled up crying for almost an hour as the water fell over me. It was a low point. A low point that I am sure every person who suffers from chronic pain/hurt/illness has hit. I could not see the point of it all.

So I did the only thing left. I prayed. I prayed harder than I've ever prayed before. And it wasn't the kind, spiritual prayer of a pious follower of God. It was angry. It was demanding. I demanded to know why God was doing this to me. Why He wasn't helping me, why I hurt so bad I wished I had never been born--if He loved me, loved everyone, why did He make some suffer and others not? It's easy to say that God puts us through struggles when our lives are normal. It's quite another thing that when you lose everything you've worked for and then some, when you're in pain every day for months at a time, or you feel jerked around--it's harder to believe that. And when I prayed in that shower, I did not believe that. I felt like I had been wronged and demanded to know why.

When you have a disease or something go wrong in your life, you need to find a sense of reason and balance in the world. The cause and effect, the meaning of life. Maybe I'm wrong, but I think that this is true for religious and non-religious people alike. Because when you lose that sense that there is some reason for why you are going through what you are going through, your whole life can become meaningless suffering.

A few weeks ago, I read some pretty amazing thoughts and comments from women that suffer from endometriosis of many different faiths. From Buddhist to Pagan to Christian to Atheist. What they wrote was inspirational. They all argued on behalf of faith for strength because it is easy to otherwise feel lost with this disease. That having faith in something helps. Whether that is people, God, a great balance, a great deity, many deities, etc... is, in some ways, irrelevant. The key is faith.

And being sick definitely tests your faith. That night, as I prayed, I honestly felt betrayed and foolish. I was so angry. I probably did not deserve any answers. But I got some. Strong, hammering, shut-up-and-listen answers. I can't share all of them because, let's face it, prayers are pretty personal things. But there is something that I definitely can, and should, share.

My suffering is not meaningless. It is difficult, frustrating, and sometimes unbearable, but it's not meaningless. We can't always do the things we are meant to without being put through certain trials. We're born rough rocks and that suffering polishes us into gems. I certainly have more polishing left to be done, and while I do not look forward to that, I can say that my trials have made me more patient, more empathetic, more loving, more kind, more desiring to help others, stronger, and better than I could ever be without them. In some ways they make me worse but overall I am a better person from my suffering. I am being prepared for tasks that I would be unable to do otherwise.

I am grateful for my struggles. I am grateful that I am a strong enough person to cope. I'll admit sometimes I'm miserable, depressed, angry, whatever. I'm sure these are feelings everyone goes through at low points in their lives. But guess what? I'm alive, life is beautiful, and God helps me more than I understood before. So many of the people who have helped me with my illnesses have done so out of love for me and a desire to follow their faiths. I am so blessed and have learned how much some of the people in my life love me because of how they have helped me through these tough times. I've lost some friends but I've made some new ones. And even though they don't always understand what I'm going through, I'm not sure what I would without the love of my family.

It's easy to fall into the trap of looking at blessings as a more-or-less-than-others thing. I personally do not endorse that view. I don't think God intended me to determine my welfare by looking at my life compared to others. Our relative view of the world and its population is not very all knowing/all encompassing. We can never fully understand what another's life is like, which consequently makes us poor judges. Instead, I try to focus on everything good in my life and see them as blessings. No comparisons. And I've got to admit, even though I would have loved to have my life without the hiccups, some pretty amazing blessings have come from all of this. And seeing how some of my 'endo-sisters' are some of the kindest most caring women I know, I've got to believe some amazing blessings have come to them too.

You might be religious or not, you may think I'm foolish or idealistic to think this way, but I really believe what I've wrote. I feel blessed not only because of all the wonderful things that are right with my life, but I really have been able to do good things because of lessons I've learned from my suffering. I've helped people and done good and put good in the world. I'm not perfect, I have much left to learned, but I've certainly learned a lot from all of this and I'm grateful. The lessons are hard, but worth learning (I hope).

Tuesday, December 13, 2011

Women who Talk

I wrote this article to help counter the atmosphere of angry, frustrated feelings that a 'prominent figure' spread, after she shared biased, negative information about endometriosis. I want to bring focus the figures and celebrities that spread truth, hope, and awareness. Women who are in places of focus/prominence and are willing to be open about their struggles with endometriosis.

There are a lot of negative stigmas about being unhealthy in modern society. I believe it is because it makes people nervous, especially when they see someone get sick through no fault of their own. It makes them think, "could this happen to me?" It spurs feelings of fear and vulnerability. To help cope with these feelings, they negatively label the sick person, to help distance themselves from the reality of an illness's lack of discernment. Whether it's conscious or unconscious, they blame that person in some way. They let something go, they contracted it, they lived unhealthily


Doing some research today, I found some pretty bogus myths about endometriosis. Things like it being sexually contracted (like an STD) or caused by an infection that the woman let go. Here are the facts: endometriosis is caused by a combination of hereditary and environmental factors, both known and unknown, and there is nothing a woman can do to prevent coming down with it (see 'Causes of Endometriosis'). There are medical and homeopathic options to help manage the disease, but no one can be responsible for developing it.

Because of these stigmas and myths, or possibly adding to these stigmas/myths, many women with endometriosis do not feel comfortable publicly acknowledging the disease. They fear negative consequences. They do not want to be labeled sick. 10% of women are thought to have endometriosis--it is the leading cause of infertility and numbers are increasing. However, you don't hear of many prominent women having it, do you? Perhaps it's because it's harder for women with endometriosis to rise to prominence--it's difficult to be active in social/work spheres when you feel unbearable pain at least a third of the time. But I believe there are many women with endometriosis with celebrity status. We just don't know it.

In 2009, Padma Lakshmi co-found the Endometriosis Foundation of America. This famous, well accomplished, beautiful woman was diagnosed with endometriosis, and she made it her mission to help other women succeed with diagnosing and treating the disease early. She is helping raise awareness and funds for this disease, helping women receive information and treatment for their disease. Of course there are many others involved with this foundation besides this famous model, but her celebrity status helps bring much needed attention to the disease. She has invited other famous individuals on her mission to educate (such as Whoopi Goldberg, who was diagnosed and treated early in life) and she and other women are doing much to teach about this disease. (Check out her website here.)

Why aren't there more women like Lakshmi? Lance Armstrong turned his battle against prostate cancer into one of the most successful cancer awareness/fundraising companies ever (before his fall from grace). Everyone is familiar with the name Livestrong. Almost everyone is familiar with cancer, diabetes, hepatitis, heart disease, asthma--why are so many unaware about endometriosis? 


I once began to explain my disease to a pre-med friend of mine, and he interjected, "We studied endometriosis in one of my courses. My professor said it was like living with cancer. He made it sound awful." It was a relief not to have to explain myself (I needed help moving because I was flairing and could not lift because of pain and cysts), but more importantly, it was awesome to hear a male friend both aware and telling me a male professor was likening endometriosis to cancer. Because although usually explaining endometriosis as the 'hormonal cousin of cancer' is an easy explanation for many of my friends, sometimes I get sarcastic smirks. Or admonitions of being dramatic. Though after being on a chemo-class drug, suffering many cysts and a big fibroid tumor, having multiple surgeries to excise migrating tissue--I don't feel dramatic. Yes, I don't have to worry about dying tomorrow, and I am grateful for that, but I am scared for every surgery, been on dangerous treatments, and I've had my life on pause for almost two years because of this disease. I've had to watch all my friends graduate college while I stay home in bed. I've wasted thousands of dollars on classes I couldn't finish. And I need to learn how to live with this disease--I will never cure it. I will never be completely healthy. In that way, yes, I feel like endometriosis has taken my life away.

And I know there are many other women who feel like that. So why is it hard to be public and fight for a better life? There are strong women who do fight. Women like Karen Duffy; TV personality and MTV VJ, Karen Duffy teamed up with the National Women's Health Resource Center to make public service announcements (after she was diagnosed with endometriosis in 1998). Duffy's biggest aim is to educate women on how to differentiate from typical period pain and the intolerable pain of endometriosis cramps. One of the biggest hurdles in women getting the treatment they need is the dismissing of endometriosis pain as 'normal cramps'. Affected women, their friends, their doctors--they are all guilty of doing this. Early detection of endometriosis is crucial for preventing further development of the disease, and the current median delay in diagnosis of endometriosis (meaning time from development of the disease to medical diagnosis) is 9 years. NINE YEARS. Duffy is making an invaluable contribution by trying to educate women and decrease this median. But to be honest, I don't think it's enough.

She's only one person. One actress. She does try to help, and I'm not trying to take anything away from her. I think any work she can contribute is great. But I wish more women with prominent connections would speak out on behalf of endometriosis. Or even prominent figures with spouses/loved ones with endometriosis. But it's not happening, and probably because of negative stigmas against poor health. I think it's odd that celebrities are so willing to share the most intimate details of their life, but not about their health. Especially when it could benefit others.

There are other women with some prominence that have announced they suffer from endometriosis but have not made contributions to raising awareness/funds, other than by drawing attention with their diagnosis. Women like Julianne Hough and Lacey Schwimmer from Dancing with the Stars,. That they admit it helps, but maybe they could help more. I've heard rumors that Dolly Parton had it, but this has not been confirmed. Think what she could do for the endo community!

I know they are only human, and it's awful enough that they're suffering, I'm not trying to criticize. I'm trying to figure out what I can do to help change the current situation. For one, I'm pretty public about my endometriosis and how it affects my life. Not in a negative way (I hope!) but in a way to raise awareness. I think it's when everyday common women become open about it, it makes it easier for everyone. Think about it, 20 years ago (and beyond) women did not talk about this really. When Marilyn Monroe suffered, she developed drug dependency (for relief) and it ruined her marriage. She could do nothing for herself or for others. It was something to be suffered in silence. That has changed so very much. And it is continuing to change. And I am proud of anything I can contribute to that change. No matter how small. It's something I am constantly working on and I hope someday I can make a difference.

Being sick is not something to be embarrassed about. It helps me tremendously to be open about it, and I've found that if I am brave enough to talk about it, other women in my company come forward too. Maybe if more celebrities come forward, we can get some much needed public awareness about this disease. Celebrities don't do the research, they aren't the doctors who treat us or the researchers who test and develop new medications. But they have more power than the average person to raise awareness and funds for this research. They are no more important than the average endometriosis sufferer, but they can bring help that the average one cannot.

So here is my challenge: Teach one person a week about endometriosis. A daughter, a sister, a cousin, a friend, a teacher, a coworker--teach and spread education. You never know who you may help. You could help a woman avoid 9 years of suffering. You could provide much needed education to a friend whose sister is suffering. It could be a friend of a friend of a friend :). That's my new goal. Who knows what change it may effect or who's ears it may reach.

Tuesday, December 6, 2011

So now what? Post Holly Endo fiasco

So yesterday I did a post summarizing the past week's events concerning a certain Holly woman and some thoughtless comments about endometriosis. Tonight I wanted to follow up with what action could be taken now, what some people have done, and what I personally am doing.

The topic covering that some pretty thoughtless comments about endometriosis sufferers and their quote, "sexually deprived spouses," has been pretty much exhausted. We know what was said. And as evidence thus far shows, Holly does not plan on retracting her comment. I was about to write that she hasn't shown any regret, but I went to check her Facebook page to see some of the latest things she had to say. I was a bit surprised. This is what I found:

Holly Hill:

"Why should being with someone for the rest of your life be about crossing your legs and controlling urges? There's times in people's lives when they don't want to go into the bedroom, like if a lady has a baby or if she has endometriosis or if a man has a particularly stressful job, so if your partner is not 'in the mood' why on earth shouldn't the other person be able to still engage in those types of behaviours? (Holly Hill, Nova 96.9, 30.11.11)
The above quote generated so many vicious verbal assaults the world was dumbfounded. I lashed back once (I’m human). I believe women are their own worst enemies. Prove me wrong. One apology from me would require many from you, so let's replace the bad with the good instead. From now on, for every insightful tip posted here on how to cope with either Endo or female bullying, I will donate a dollar from every ebook I sell to these combined causes. Let’s learn to be the best women we can be."
Now, I've got to say that as far as apologies go, this does not seem the most sincere in some respects, but very meaningful in other ways. She's making it clear that she does not personally see fault with what she said, and is not going to retract anything about it. In that way, there seems to be no apology. But her actions support that there may be an inkling of regret. She promises to donate money to endometriosis in some way or form.

This is what Holly is doing from this experience. Despite her continued belief that partners of endometriosis sufferers should not have to 'control their urges' she at least has acknowledged that endometriosis is not the casual problem she made it out to be in her interview. One can only hope this also means she will no longer use endometriosis as a tool for promoting her ideals.

In my opinion, it's not a glorious apology (more of a lack of apology), but I'm grateful for the effort. It shows respect for other women and desire to maintain a polite disagreement, rather than a hostile war (although I'm not sure it's possible). Although I did feel that labeling every women who disagreed with her as 'vicious' was wrong. I saw angry posts, but I saw a lot of civil ones too. Many women showed a lot of class, and it seemed like because of their civility, they were ignored. Who knows? I eventually will post my way of coping with endo, but I need to wait a little while longer for my anger to diffuse. I need to accept that this apology (the small effort already surprising I admit) is as much as we're gonna get. But that's going to take me a little more time.


More important (I believe) than what Holly plans to do, is what women with endometriosis and their loved ones plan to do. This 'dark' chapter of endometriosis awareness/treatment is a prime example of the lack of understanding by the general population. It sort of knocked me in the stomach, to think someone could be callous about endometriosis, and how they could be so blind about a disease they know enough about to name. Meaning, she knew endometriosis affected sex lives, without having any idea of why, how, and how people cope. To me, this said that people who knew the name were not getting adequate education about what the disease entailed. It was a wake up call. (However, let me make this clear--this does NOT make Holly responsible for my actions. They are ultimately up to me and my anger over her comments motivated me, not her comments. I tried to find the comment she made about her actions leading to the cure of endometriosis, but it seems she deleted it. At least she realized it was bang out of order) Correction: She did not take the comment down, or at least she might have only hidden it. Here it is: Holly Hill: "These pages are going to be the testimony that gets endometriosis cured..."

I love how many women with endometriosis have used this as an opportunity to educate others about the disease. It's a shocking enough occurrence to grab people's attention, and then you can lead into about what endometriosis is REALLY about. It gave me conversational opportunity with at least three people who, prior to this, knew little about the disease. Because although people who really care about these diseases or me will read this blog, there are many more who won't. So having another opportunity to educate was great. Additionally, there have been many women on Facebook who have encouraged others to use this as an educational opportunity. I saw more "fight like a girl" slogans than I can ever remember, and saw a lot of Facebook status's focused on educating about endo! It was amazing! Women (and men) are rallying together, stoked by anger, but channeling it into positive action. It has been an inspirational week for me.

Not only has this been an educational opportunity, but it's been an excellent catalyst for mutual support. Women have been sharing their backgrounds, sharing their stories, sharing their struggles, and other women rushed in with words of encouragement. I've made at least ten new endometriosis friends and I have felt less alone in this past week than I have felt in a long time. Women have been making it clear, for each other, that we are not suffering alone and that we are completely worthy of loving/supportive partners BECAUSE of our disease. Many women with endometriosis have at one time (at least) felt inadequate for a fulfilling romantic relationship because of this disease. We know that's not true, but sometimes we fear it is. But the truth is that the struggle of endometriosis can make you into a strong, wonderful person; one who is worthy of quality relationships because of the pain. And this week, and the stories it's generated, has been an excellent reminder of that.
For me personally, these events have motivated me to not only be more open about my struggles, but to look for ways to help everyone with this disease. One way I've gone about this is blogging, hopefully putting words to feelings and frustrations that many people are feeling over this. More meaningful, I think, is I'm using some personal skills to fund research. I am an excellent baker and am good at making both traditional and gluten free baked goods! So, I am opening orders with friends for baked goods, and donating all the proceeds to endometriosis research. This frustration creates energy for me, and I want to channel that energy into something that can make a difference.

I've seen other women using this as an opportunity to raise funds for endometriosis. One woman has an entire company/line of products dedicated to endometriosis awareness. Look at some of their endometriosis pictures here: http://www.facebook.com/OSLpics. Not only do the products educate about endometriosis, but her proceeds are dedicated towards endometriosis awareness/research. Other women are donating personal funds as a way to combat the ignorance/hate they feel Holy has spread.

And now, as a full day has passed since I read Holly's statement about what she said, I can share my calm, collected thoughts. Holly has not issued an apology. In my opinion, she is trying to prevent what she said from negatively affecting book sales. However, there is no apology in what she said and she has turned this around into her 'being the victim'. Unfortunately, I believe she honestly feels victimized in this situation and that she said nothing deserving of backlash. She's not sorry for what she said and probably never will be.

But you know what? I don't care. I'm moving on. I'm going to dedicate more of my time to stopping ignorance like this, so that if anything like this ever happens again, there will be no excuse for it (not that there is--but I can't say that before this, I've done enough to prevent things like this being said). I want people besides those immediately affected by endometriosis to care when awful things like this are said. And the only way that is going to happen, is if those afflicted work to spread education, hope, and awareness.

Please, post any thoughts or feelings you have on this. What are you doing to spread awareness? Do you have plans for raising funds? What about those without the disease, have anything your friends or family done helped to influence your views on it? Let's share this, motivate each other, and make a difference!
Here are links to some more endo blogs related to this:

http://endometriosismylifewithyou.blogspot.com/
http://coocamungas.blogspot.com/2011/12/bright-and-vibrant.html?spref=fb

Monday, December 5, 2011

Holly Hill, Endometriosis, and Stupidity

Although part of me hates myself for even doing this post, I think it's pertinent I do. Because this story is a prime example of the ignorance and bigotry that surrounds endometriosis. It has become a sort of rallying point for endo-sufferers and is such a blatant showing of ignorance that it's even gotten people who knew nothing about endometriosis prior upset!

So here is my summary of the situation, notice I am trying to be factual and level headed. Please do not mistake this for agreement or support for her. Holly Hill is a self-proclaimed author/activist for open relationships. She believes that males are biologically programed for cheating and are forced into secrecy by partners who refuse to be open-minded about infidelity. She instead preaches 'negotiated infidelity', meaning sex with multiple partners is okay, so long as you and your partner lay out the ground rules. She believes the idea of one-man-one-woman for a lifetimes marriage is dead.

She draws her unique ideas from her personal experiences. She used to be a mistress of a married man who convinced her to quit her day-job and live off his wealth. But then he dumped her and returned to his wife. Desperate for money, and likely depressed, Holly advertised herself as a 'sugar baby', offering companionship, cooking and sex to a man in return for a $1,000 per week salary. She details her experience with 5 following partners in a book she published and sold in Australia. I won't name the book here because I refuse to advertise for this woman.

Well, of course this contriversial view that she is so loud about gets lots of attention. She's been on talk shows, Nat. Geographic, etc., but more because of how she spreads her ideas. Anyone who's studied psychology should know that this woman's views are anything but new. Evolutionary psychologists have battled to explain why partners cheat in monogamous relationships for decades. Probably why they battled so hard is because the evolutionary psychology module is inadequate to explain human behaviors like infidelity. (Let's just say, that the primary evolutionary success of human's is their neuroplasticity, meaning human cognition adapts well to current situations. It's more the diminishing negative consequences that are responsible for encouraging infidelity, not genetic predispositions. In fact, the human species has been evolving for thousands of years, and only in the past few hundred have offspring stood equal chances of survival and continued proliferation whether or not their parents were providing together. Meaning, that if a man did not stick around to protect for and provide for his offspring, they stood little chance of surviving and further proliferating. But I suppose that is getting more science-y than I need to.) My basic point is that Ms. Hill enjoys using science to support her controversial views, yet just like those before her who have spouted such ideals, her views do not have adequate scientific support.

Ah, but I digress! How about for my next entry I go further into why mutual fidelity is necessary for successful relationships? In the mean time, let me point you to an interesting article I found: http://www.psychologytoday.com/blog/building-great-marriages/201107/is-monogamy-dead. It just explains the flaws in reasoning that infidelity will somehow strengthen a marriage.

In the meantime... So this woman has rather controversial views, as I've shown. Now, to be honest, I would not care two cents for this woman's views before Nov. 30th. I'll be honest, I personally think her views are disgusting, and an insult to marriage. But the beautiful thing about free agency is that people are allowed to do and think as they please. As far as I am concerned, what people do in their own lives are between them and those concerned. I also believe they will face consequences from the big-man-upstairs, but that is none of my concern.

However, miss Holly Hill crossed the line from controversial to discriminatory. She did a little radio spot on an Australian radio-show, talking about how allowing your spouse to cheat on you shows them that you love them. Yep. Not only did she say that, she said that when women 'cross their legs' for an extended period of time, like from pregnancy or ENDOMETRIOSIS, they should be willing to let their men find sexual satisfaction elsewhere. Yep, if you don't believe me, here's the link: http://www.novafm.com.au/audio_is-infidelity-the-secret-to-a-successful-marriage_103788#HeadingReply. Make sure to have a thick skin when you listen, man or woman.

But Holly doesn't stop there. she moves on to post on her blog that 'sexually deprived spouses' are suffering. That being unwilling to offer them sexual options is unloving. In a response to one outraged endo-sufferer, she wrote, "If you can't f@ck your husband, of course he should be able to go elsewhere for sex. You are not his wife, you are his jailer and one who tortures him as well. Why should you both suffer such a dreadful disease?"

Yep. Not much I need to explain on why that was awful. Women from the endometriosis community are outraged, furious, understandably so. Many rallied against her, demanding an apology or just harassing her to no end out of fury. Some have left messages of hate and bitterness on her facebook page. Some have written angry letters. Some are simply just demanding some sort of apology or trying to educate her on her lack of understanding of endometriosis.

Clearly, a lot is missing from Holly's understanding of endometriosis if she thinks it is a simple matter of not being in the mood for sex. For many women that suffer from active endometriosis, sex is a horrible complication of the disease. Because endometriosis inflames and adheres internal organs, sexual penetration and thrusting (that's right, I used bedroom words!) can be uncomfortable to unbearably painful, depending on the locations and extensiveness of the endometrial implants. To make matters worse, if the woman does not feel comfortable discussing the pain with her partner, and continues to have sex despite the pain, sexual interaction and all thought about it can become emotionally distressing and actually trigger pain in reproductive organs (just the thought). Often women fear that the pain and adverseness to sex will negatively impact their romantic relationships. Sometimes they do. It takes a man who is understanding and empathetic to the disease (and all it entails) to maintain a healthy, happy, and fulfilled romantic relationship. Sadly, not everyone is sympathetic, and I have heard sad tales of ended marriages because of inability to compromise with this disease. It is certainly not a simple manner of 'crossing your legs'.

Endometriosis certainly does affect my relationships. There have been weeks at a time where I was unable to do any social activities because of the pain that was wreaking havoc over my body. Imagine trying to go on a date when it feels like your insides have a knife stuck in them! I know it is extremely difficult for my boyfriend, who is a wonderful, understanding man, to see me in horrible pain and be unable to do a thing about it. There was once a time where he was especially angry when I was feeling ill, and I thought it was because he was frustrated with me. But upon speaking, it was revealed that he could not get over how angry he was that no one was able to medically help me. That I was still suffering after countless doctors appointments. If he does feel any anger towards me over this, he has never even hinted at such a situation. I have even once told him that I would understand if he wanted to leave and date someone who wasn't ill. I love him very much and just wanted him to be happy. Like countless other women with endometriosis, I did not want to force my beloved significant other to suffer with me. Many women with endometriosis have found themselves backed into this situation. Where, full aware of the burdens this disease carries, we are willing to protect others from suffering with us, even at the expense of our own happiness. However, he, like many other endo-man-supporters said that he was in for the good and bad times. That he was much to attached to me to give up that easily.

Women who suffer from endometriosis are some of the strongest women I know. They know what real pain and suffering is. They know what it is like to suffer from a disease with no cure and little relief. To suffer often alone and without understanding from others. This has made them strong and empathetic people. Unfortunately, they often do not receive the empathy they so willingly dispense on others. I often have had friends, family, coworkers, doctors, and other medical personnel treat my pain like a mental choice. That if I just toughed it out, everything would be better. People do not often realize that I am toughing it out every day I get out of bed. This lack of empathy and understanding is hurtful but widespread. We must do a lot to educate our friends and loved ones about the true nature of this disease. It's an uphill battle but we do it out of the hope that as more and more women are diagnosed, they'll receive understanding rather than bigotry.

So, when a woman like Holly Hill says something like she did, there is certainly going to be a backlash. A violent one too, may I add. We struggle enough, we don't need people like her spreading untrue, biased, and completely uncalled for information too. Maybe for her an open relationship is fun, but for the majority of people, infidelity is one of the most hurtful things that can ever happen to them. As someone who still believes in the sanctity of marriage, and that faithfulness to one another is vital for a successful relationship, I see NO justification for such behavior, especially if someone suffers from an incurable disease. In my eyes, spreading of such ideas (that infidelity is warranted by a disease) is discrimination and hate speech. What she said was plain awful, and while I don't agree with verbally assaulting her, I certainly understand why women are angry and hurt and reacting the way they have.

And as this post is probably long, unorganized, and not thought out as it is, I'm going to stop for tonight and work on my book! I'll work tomorrow, but I'll close by saying that this 'dark' episode of endometriosis awareness is a great opportunity for endometriosis women to rally together and further a better understanding of the disease. This is a prime example of ignorance about the disease and public one at that. I hope I can turn this into something positive, I'm sure there are other women who think the same!

Friday, October 7, 2011

Bob's Red Mill

Note: This post was imported from the original blog this site is based on. It is a personal account of my experience and is not very relevant to the current website. I have kept it out of respect to the journey that led me here. 

My older sister  took me on a bit of an adventure yesterday. We went and picked up my adorable nephew from preschool first, and we had about an hour before his doctor's appointment. So, we stopped at the old Bob's Red Mill. For those who don't know, this is a company that makes a lot of healthy, high quality grain products. And at their restaurant/store, they had EVERY product they make! As one of the best producers of gluten free substitutes, this was very exciting for me.

I ended up buying a 25 pound bag of gluten free all purpose baking flour. The biggest obstacle for baking for me has been how complicated switching out flour can be. You have to add starches and various gluten free flours, and it takes much longer than it should. The great thing about this blend, is all of that is already taken care of, so you can use it straight across. It usually costs $6 for 4 oz or something, so I got a great deal buying it in bulk. I am making cookies today, something I've really missed since I had to go gluten free!

The big challenge of going gluten free for me is that I'm hypoglycemic--I have to eat snacks every two hours, or I get really shaky and can pass out. It used to be a huge problem before I figured out how to manage it. However, the most convenient snacks, ones that hold up well for long periods of time in purses and backpacks and aren't too sugary, are generally made of flour. It's hard to lug around yogurts and peanut butter.

I am working on figuring it out though and making it work because I think it may be making a difference in my pain. The whole point is that by reducing and eliminating gluten as much as possible from my diet, I am reducing the presence of a rather inflammatory chemical. And, as endometriosis is an inflammatory disease, especially mine which inflamed my entire abdominal cavity, cutting out gluten can help reduce the 'fanning of the flames'. Studies have shown that around 50% of women with endometriosis experience significant reduction in pain when they eliminate gluten from their diet. I'm giving it another month, to be sure, but I may luckily fall into that 50%. It is a bummer to have to make such a huge dietary adjustment, but I need to count my blessings that there are things I can do to reduce my pain and discomfort.

I bought several things at Bob's Red Mill, and I even got a sandwich, which was made of the first GOOD gluten free bread I've had so far. It was nice to feel excited about these changes I need to make, and to have hope that there are products that make the change less difficult. Plus, I'm lucky that I can have a tiny bit of gluten without getting severely ill. I just need to avoid it as much as I can, not 100%. My mum is even giving me her old breadmaker so I can make my own gluten free loaves. There are plenty of options, products, and help to make this change more tolerable.

Thursday, October 6, 2011

IBD and Gums

Note: This post was imported from the original blog this site is based on. It is a personal account of my experience and is not very relevant to the current website. I have kept it out of respect to the journey that led me here. 

Did you know that IBD makes your gums swell and causes sores in your mouth? Not gross stuff, you can't even see it, but I've definitely experienced some spontaneous bleeding. Well, for those who aren't aware--I'm... well... rather tiny. I admit I am on the petite side of normal women. And in sync with this, I have a small mouth. Small teeth too... but still, cramming a full set of adult teeth into a tiny mouth, including fully surfaced wisdom teeth, is a little much. And when I have a colitis flare, my gums swell and my tightly packed mouth hurts even more. It especially hurt during this last flare, so I went to the dentist.

I had an amazing, sweet/kind dentist whom I can't correctly pronounce the name of. I stumble over it so much that I have just been calling him 'doctor', because I'm embarrassed. He took pity on me, without any prompting from my side to be honest--he just saw my medical rap sheet, looked at me, and asked, "how can this much be wrong with you when you're so young?". He asked why I hadn't had my teeth out yet, and I explained that I had an appointment but I had to cancel it because it conflicted with my surgery I had in June to remove a tumor. At this news, he squeezed me in that SAME DAY to get out two of my wisdom teeth. He also coded it special to make it cheaper for me. He would have taken them all out but he suspected (correctly) that I would be slow to heal with all my medical issues. He didn't want to hurt me on accident. But he did an amazing job with the removal, I had a pretty smooth recovery, and I just had the other half removed by a friend of his. His colleague wasn't as good as him, but they still squeezed me in quickly and got me a special on pricing.

Having invisible diseases like endometriosis and colitis means that a lot of people don't understand what's wrong with me or expect me to be healthier than I am. I've known people to treat me like I'm 'making it up'. In all honesty, I'm more sensitive about it than I should be, but it really hurts my feelings to have people treat me like I'm faking. I've had to give up so much because of these diseases, and I would honestly cut off my leg to be healthy again--to have people belittle it adds insult to injury and I've cried over it before. It's stupid, and I shouldn't let it get to me, but I have before. So to be treated like a sick kid who really needed a break by this doctor/dentist--it was a really nice change of pace. He knew what colitis was and knew I was in constant pain, and that was enough for him. Thanks to him I have all four of my wisdom teeth out, and even though the left side hurt more and my stitches keep snagging (the other dentist wasn't quite as good as him), I'm grateful to have them out. The pain I've had for years in the corners of my mouth are GONE!!

Moral of the story? When you're sick--really sick--some people will have compassion for you, others will treat you like a big fat faker and think you're exaggerating. I've experienced both. I try not to whine; I have a jar labeled my "Bitch and Moan Jar" in which I have to place a quarter every time I whine. I get the money back if I can go 21 days without whining. I've made it 5 ha ha. But it's really helped me be aware of my complaining. My Mum actually told me she sometimes forgets how sick I am because I don't whine about it. And when you tolerate it well, it will make you tougher and able to endure hardships better, not to mention make others tolerate you better. But it also means a lot of people will think it must not be bad if you aren't complaining. Whining for attention isn't my style though, and I don't think anyone who is actually sick cares about getting 'extra attention'. You just hope people will have compassion and be patient with you, and if they're not, it's best to just ignore them. Otherwise you'll constantly be let down. Appreciate those who show compassion and patience, and screw those who don't.

Tuesday, September 20, 2011

Prednisone can equal pneumonia...

Note: This post was imported from the original blog this site is based on. It is a personal account of my experience and is not very relevant to the current website. I have kept it out of respect to the journey that led me here. 

Dear lovely readers:

Because of a recent colitis flare up, my doc put me back on what is called a 'prednisone taper', which is when you take 3 pills of prednisone for 10 days, then 2 pills, then 1 pill of prednisone, each successive 10 days. Prednisone is a type of steroid, and steroids are used to control inflammation (the swelling in my intestine). It's a great drug for both asthma and colitis, though it actually stimulates endometrium growth and thus is not a great drug to take when having trouble with endometriosis. But as colitis is much more life threatening, it takes precedence in treatment. One really unfortunate side effect of prednisone is it depresses your immune system, making you much more susceptible to infection.

I caught a pretty nasty throat virus after my first week of steroid treatment. My throat hurt to even touch, but I didn't want to be a baby so I brushed it off. I had a high fever (for me 100* is very high--I run pretty cool, around 96) and just felt miserable. Well, finally I started coughing up blood one night I knew something was up. I went into urgent care the next morning, saw a doctor, and was informed I had pneumonia. The doctor was shocked that I had even reached a 100* fever, considering I was on prednisone and it impedes your ability to fever. I was really sick he informed me. I caught pneumonia in August! I felt reassured that I was not 'a baby' and am now convinced I have the opposite of hypochondria ha ha.

So, I am back in Portland, getting out of the air of Utah so that I can recover in peace from this disease. I'm on strong antibiotics, and even though my chest still hurts, I'd like to think it doesn't hurt quite as bad as it did. And my fevers are calming down. I am just very very tired, and wish I wasn't sick. I wish that I could go a few weeks without having something dramatic happen. And I wish I wasn't so tired. But I'm grateful for the medications out there and the medicinal help I have for all this.

Not to mention, I just started a bunch of homeopathic treatments for my endometriosis. I'll go into detail about these treatments and how they've helped, but I have completely revamped my diet and routine and I think it has been making a difference in the pain. I've been reading informative self help books for endometriosis and tweaking my diet to eliminate every negative influence I can think of. And maybe, if I'm lucky, I'll be able to get rid of this stuff...

Monday, July 25, 2011

Causes of Endometriosis

Causes of Endometriosis
This article is for those who wish to know more about the physical causes of endometriosis. It was written both for those with the disease and those wishing to learn about it.While it was published in 2011, I have continued to add and expand upon the article to improve its usefulness.

Endometriosis is a disease that disrupts and distorts normal female reproductive functions. It causes the bodily spread of a material similar to that which is shed during menstruation ('endometrium'). This growth and spread of 'endometrium' can cause: pain, inflammation, scarring, infertility, sickness, and disability. While the effects of endometriosis are well known, the causes of the disease are less understood. 

Technical Summary:
Endometriosis is hypothesized to be caused by a combination of genetic vulnerability and environmental effects. This interaction of innate bodily defects and immune dysfunction, along with the negative influences of foreign bodies, is believed to lead to endometriosis. 
Simplified Summary:
Research supports that endometriosis is likely to be caused by two primary factors: characteristics/qualities of a person's body (e.g., genes and physical makeup), and environmental factors such as toxins. Put simply, a person's genes and their environment combine to influence endometriosis. 

Innate Vulnerability
The characteristics of our bodies can encourage or discourage the development of diseases like endometriosis. Innate vulnerability is composed of the aspects of our body that are 'built' for an illness. They are the biological issues that make a person more likely to develop a disease. These include factors such as genetics and changes in the womb.

The Cup Analogy
For non-biology folks, think of it this way: a person's risk for illness is a cup. When the cup fills 100% or more, they will develop that illness. However, if the cup only partially fills, that illness will not develop. What fills these 'cups'? 

Innate Vulnerabilities are Water
Our cups are partially filled by our innate vulnerabilities. The characteristics and qualities our body has from birth.
In this example, we'll say that water (blue) is the cup's filling we have from birth. The amount of water represents how vulnerable a person is to an illness. Those with high vulnerability may have a cup 80% full of water, while those with low vulnerability have a cup 20% full of water. A cup filled with 100% water would mean a person was born with an illness. The less full cups represent fewer innate vulnerabilities, and that means they are more difficult to fill. 

Environmental Toxins are Orange Soda
A cup starts with a water filling at birth, yet that alone is often not enough to develop an illness. Environmental factors, like toxins, also help to fill that cup. And a cup's starting water (innate vulnerabilities) affect how easily it can be overflowed by those environmental factors.

For our cup example, imagine environmental toxins are orange soda, which is added by exposure to outside influences. For example, a group of people might experience 40% of a cups volume in environmental toxins (orange soda). For some people, that 40% is not a big deal. For others, a 40% filling is catastrophic. In our example, a 40% will not overfill a cup with 20% water, but it will overfill the cup with 80% water. (40+20=60, but 40+80=120).
Folks with low vulnerability will not fill their cup with environmental toxins, and they are safe from the illness. However, those with high vulnerability (80%) will overflow (120%), and they will develop endometriosis. Make sense? 
So, for endometriosis, what makes up the differences between those people with a cup 20% full of water, and those with a cup 80% full of water? What the heck did they do to earn that lesser predisposition to this horrible disease? Well, as the original water-fill of a glass is determined by innate qualities, they did not do anything to earn it. They were born with it. Certain innate qualities can make one less vulnerable (less water), while other innate qualities can make one more vulnerable (more water). 

Innate Qualities that Influence Endometriosis
There are certain bodily qualities that 'add more liquid to your vulnerabilities glass' and make endometriosis more likely. These qualities are related to what you inherit from family (your genetics) and the way your body reacts to certain environments (1).  

Uterine Outflow (Retrograde Menstruation)
Bodily qualities, which make the outflow of menstrual lining more difficult, can increase the likelihood of retrograde menstruation, and are linked to endometriosis. Remember, menstruation is another term for a period, when the uterus sheds its accumulated lining of blood and cells (endometrium). Retrograde menstruation is when the contents of menstrual lining flow backwards/inwards, into the body (the pelvic cavity) and is cited at a critical factor for endometriosis (2). These endometrium-like cells can then grow/divide and create a similar lining outside the uterus. This backwards flow can be caused by defects in proper outflow (for example, a narrow or partially obstructed cervix and heavy menstrual flow). However, retrograde menstruation alone is not considered enough to cause endometriosis.
The lack of attachment between the ovaries and uterine 
tubes results in an opening for Retrograde Flow
Unusual Cell Growth
This topic is a little harder for me to simplify, so I apologize if I sacrifice specificity for ease of reading. An older theory of endometriosis is called the 'coleomic metaplasia theory'. This theory suggests that certain qualities can make 'normal' cells, those on the outside of the ovary, change into cells similar to endometrirum (the cells that are responsible for the menstrual lining (the blood that is shed during a period)) (3). So, according to this theory, retrograde flow is not the only way to spread those cells outside of the uterus. Normal cells can change into endometrium-like cells, without originating from the uterus.

These theories are not really in conflict with one-another either. Rather than meaning that it is one cause or the other, research on this topic helps to explain how endometriosis happens in patients that have not had a period (children) or those than have never experienced retrograde flow. And, while the theory is older, there is current research that supports it (4). This 'abnormal growth' can be more likely to happen in certain women, increasing their likelihood of developing endometriosis.

Immune Dysfunction
A second innate quality that impacts endometriosis, is a failure of the immune system to clean up menstrual debris (those that do not properly exit the body).
Based on the information above, it can be fairly easy for endometriosis cells to grow in or escape into the rest of the body. Thankfully, in most women, the immune response is able to stop or clean this debris, preventing it from becoming a problem. However, an immune defect in this cleaning of 'loose' menstrual debris is linked to increases of endometriosis (5). This is also reinforced by studies that look at 'biomarkers' for endometriosis patients. These studies support that certain proteins, ones that help 'instruct' immune clean up, are reduced in endometriosis patients (6). Meaning, there is evidence that the immune system does not have enough of these proteins to do the job 'well'.

How critical is this immune dysfunction? It is hypothesized that, while 70-90% of women experience some amount of retrograde menstruation in their lives (7), but only about 7-10% of women develop endometriosis. Even in that percentage, there are ranges of severity. Again, retrograde menstruation can occur rather easily; uterine tubes (AKA fallopian tubes) are not directly attached to ovaries, and are open to the pelvic cavity. The immune function of 'clean up' is thus a fairly important factor in endometriosis development.

[Personal note, although there is disagreement between scientists about endometriosis occurring in higher rates in women with autoimmune diseases, my personal experience supports the correlation. I have both moderate chronic asthma and IBD, and both 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.
Note UPDATE: Since I wrote this article, there has been an explosion in evidence linking endometriosis to immune problems and deficiencies. Most research supports the connection!]

External Influences on Endometriosis
[Note: the following section is somewhat out of date, and in need of more recent sources. Please proceed with caution until I can better update it with my current knowledge and understanding--04/2017]

A variety of environmental toxins have been linked to endometriosis. An environmental toxin can be defined as any contaminant that enters an organism and introduces harm to it. Some identified toxins that have been linked to endometriosis are stimulants (coffee, amphetamines, and nicotine), xenoestrogens, phthalates (plastics), PCBs, dioxins.

Stimulants
The exact relation of stimulants is complicated, and at the time of my writing this, the papers were a little beyond my experience. The key message I can summarize, is that stimulants can affect the growth rate and spread of endometriosis. Stimulants can disrupt a body's natural control of growth of the endometrial cells, the rate at which they spread out from the uterine cavity, and the behavior of immune cells responsible for their clean up (8). To summarize: they can amp up how fast and far the endometrial cells spread.

Stimulants disrupt the immune function by affecting the actions of monocytes. Monocytes are a type of immune cell, and their primary function is too dissolve and eat things that are not where they should be. They can help control the spread of migrating tissue, and their receptors are affected by stimulants. Monocytes can turn into macrophages (think of these as the giant garbage eating immune cells that clean up foreign/dangerous/dead tissues), which are also affected by stimulants. As research shows these already are reduced in concentration for women with endometriosis (9), consider how important it is to reduce interference from outside influences like stimulants. 

The take home message from this, without any mumbo-jumbo? Avoid stimulants. If you want to help limit the growth of endometrium and avoid interfering with its clean up, limit your stimulant intake. Try doing yoga in the morning instead of drinking coffee. Maybe try switching to decaf (slowly) or reducing your intake. If you smoke, quit smoking. It wreaks havoc on endometriosis. And if you have ADHD, consider incorporating behavioral therapy into your treatment, to possibly reduce the amount of dosage required (remember to always talk with your doctor when considering changes in your health regimen). I myself, use a combination of behavioral, physical, and medication therapies.
Xenoestrogens
Xenoestrogens are chemicals that mimic the hormone estrogen. Hormones are a way that our body sends messages to different organs (using a network called the 'endocrine system'). Our body uses hormones to regulate our organs and their functions, helping to establish a balance throughout our system. Estrogen is a key hormone for the regulation of reproductive functions. Our body can use estrogen, at different amounts and times, to send critical messages across our system. Puberty, menstruation, pregnancy, and menopause are all influenced by estrogen. 

However, xenoestrogens imitate estrogen; they mimic the 'shape' and 'signal' of estrogen in our bodies (10). This can disrupt, block, and wreak havoc in estrogen messaging. By introducing additional 'fake estrogens', these mimics upset a careful balance of estrogen amounts/timing, changing the messages our body receives. This means, xenoestrogens can send messages our body would not otherwise send, and cause changes that can harm our body. They cause growth and changes, in women and men, outside of a body's blueprint, without intention.
For example, in the reproductive system, xenoestrogens accelerate the irregular spread and growth of endometrial cells (11). When any balance is upset in the body, trouble tends to follow. In the case of endometriosis, excess estrogen influences excessive growth of endometrial tissue outside of the uterus. Xenoestrogens can augment this problem.
What does that mean for us? The take home message is to avoid as much xenoestrogens as possible. And to avoid them, we have to be aware of where they are. 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." 
Xenoestrogens are found in commercial, 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. I use BPA free plastics, and when using a microwave, I only heat food in ceramic containers. I also only eat/drink from BPA free materials (such as glass, ceramic, metals, or safe plastics). Xenoestrogens can be difficult to avoid, but it's best to try as much as possible. They are perhaps some of the most dangerous agonists (essentially chemical increasers) of endometriosis around.

To be Continued
Thank you very much for reading, I hope you found it educational! 
Here are the links I mentioned: 

References:

  1. 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.
  2. 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.
  3. Matsuura, K., Ohtake, H., Katabuchi, H., & Okamura, H. (1999). Coelomic metaplasia theory of endometriosis: evidence from in vivo studies and an in vitro experimental model. Gynecologic and obstetric investigation, 47(Suppl. 1), 18-22.
  4. Laufer, M. R., Sanfilippo, J., & Rose, G. (2003). Adolescent endometriosis: diagnosis and treatment approaches. Journal of pediatric and adolescent gynecology, 16(3), S3-S11.
  5. Olive, D. L., and Henderson, D. Y. (1987). Endometriosis and mullerian anomalies. Obstet. Gynecol. 69, 412–415.
  6. Borrelli, G. M., Abrao, M. S., & Mechsner, S. (2013). Can chemokines be used as biomarkers for endometriosis? A systematic review. Human Reproduction. 29(2), 253-266.
  7. 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.
  8. 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
  9. Berbic, M., Schulke, L., Markham, R., Tokushige, N., Russell, P., & Fraser, I. S. (2009). Macrophage expression in endometrium of women with and without endometriosis. Human reproduction, 24(2), 325-332.
  10. Sonnenschein C, Soto AM. An updated review of environmental estrogen and androgen mimics and antagonists. J Steroid Biochem Mol Biol. 1998;65:143–150.
  11. 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.
Last Edit: 4/20/17

Thursday, July 21, 2011

Lupron... Lupron Lupron Luuuppprrooonn

Note: This post was imported from the original blog this site is based on. It is a personal account of my experience and is not very relevant to the current website. I have kept it out of respect to the journey that led me here. 

I want to make this a brief post because it's getting late and I am tired, but I wanted to say a couple things about Lupron tonight because I can't stop thinking about it.

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. 

Sunday, July 17, 2011

Balance

Note: This post is from the original blog that led to developing BedRiddenHead. It is a personal account and not a review of research. I've included it out of respect to the journey that led me to here.




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)


Wednesday, June 8, 2011

Pre-Surgery Jitters

Note: This post was imported from the original blog this site is based on. It is a personal account of my experience and is not very relevant to the current website. I have kept it out of respect to the journey that led me here. 

In less than four hours I am heading off to the hospital for my laparoscopy for removal of endometrial implants, adhesions, a bilateral uterosacral nerve ablation, and possible removal of my right ovary. And the idea of 'resting before the big day' is laughable. I am tired, and few times I've almost drifted off to sleep, but then I remember something I need to do and I'm up.

Probably because this is it's last day to torment me, but my endometriosis pains have been awful today. Cramping, stinging, stabbing, tremors-down-the-legs awful. It's like it needs to get in all it's last moments before it's cleaned out. Luckily I have had some awesome friends to distract me from it all.

My old friend Jane* and I have been reconnecting these past few weeks and she came over for the whole evening. She was patient while I wandered aimlessly in my bedroom, trying to finish last minute cleaning and organizing so I don't have to stare at a messy room I can't clean while I'm recovering. And after we convinced myself to leave it be, we made savory salmon crepes (crepes with cream cheese, arugula, and smoked salmon--let me know if you want directions!) that were absolutely delicious. We wanted to get in some henna tattooing time, but thanks to my out-of-it, ADHD behavior, we ran out of time. But we still got to talk-talk-talk the whole time and it was a lot of fun!

Next I talked to my lovely but tired boyfriend Josh*. With the time difference between states, it was already almost one-o-clock by the time we connected. But we chatted for about thirty minutes and he gave me great advice for calming myself for the surgery today. I could share it... but I also don't care for broadcasting the details of my conversations on my blog :).

After we hung up, I was alone and I couldn't get over the anxiety coming from a combination of horrendous pain in my gut and anticipation for the surgery. Luck was on my side however, because I soon bumped into my good, old friend Dave* on Facebook. First he offered to drive two hours to come keep me company until I could fall asleep, so I wouldn't have to be alone and in pain the night before my surgery. But upon finding his gas tank near empty and local gas stations closed (remember in Oregon it's illegal to pump your own gas), his trip was canceled. To compensate for the loss of a visitor, we chatted on Facebook and then the phone for 2 1/2 hours.

Some great friends have really come through for me at various times during this experience. If anything, I wish I had a few more friends because I refuse to take up the same friends free time over and over again to satisfy my need for support! But the ones who have come through, please know how grateful I am! My friends have done such a great job of distracting me tonight, and I'm appreciative. I needed it. Because now that I've been left to my own devices, at 4:20 am, the pain is back and I am doing everything I can not to worry about my surgery. Everything logical tells me I am excited for this. I will finally be stopping the pain, pain I've had badly for almost a year now! My doctor said I should feel better even IMMEDIATELY after the surgery, because even though I'll be cut up, I won't have adhesions tugging on my body. I try to imagine what that might be like, but I honestly cannot. But I think it will be pretty amazing.

Problem is, that no matter how necessary a surgery is, no matter how great it will make you feel or how life changing it might be (and at this point now this surgery will be life changing for me--at least drastically changing how my life has been these past few months), no matter how much you want and need it, it is still scary. And it does not matter how many you've had or whether you're an adult or child. Going into surgery is scary. This will be my third recent procedure I've had. Two years ago I had major shoulder surgery, one year ago I had a laparoscopy for a 7 cm cyst and ended up having my appendix removed (chronic appendicitus is more common in women with endometriosis), and today I am having a laparoscopy for severe abdominal pain due to endometriosis. I've had complex MRIs and CAT scans. I've had a sigmoidoscopy and a colonoscopy. By now I should be a seasoned OR traveler. But I am not looking forward to having those IVs hooked up to me and being wheeled into that OR. I don't like that I won't know what they'll find till after the fact. I feel frustrated that I won't know if I'll lose my ovary until after. And being put under makes me nervous, because a small part of me is worried I won't wake up.

But a combination of writing this now and advice from friends and myself is helping me get by. Writing about what is happening is therapeutic. Of course I love that I am informing people of what's going on. Whether it's family/friends checking in on me, or a stranger who might gain some valuable tidbits for themselves or a friend who is suffering from one of these diseases. But it is also therapeutic in that I am able to sort through what is happening and how I feel about it. Not to mention that I absolutely love writing and having something interesting to write about, that people may want to read--it's very satisfying.

But onto the advice. I was reminded tonight first not to worry about the things I can't control. It's true that there are risks with surgery. But when I've reached a point that surgery is my only option for a chance at a normal quality of life, I have reached a dead-end point where the benefits greatly outweigh the risks. And my family and I have gone lengths to get me a great and experienced doctor, a surgery at a capable hospital, and we can afford all the precautions to ensure my safety. I am healthy enough now, have overcome the inflammation with ulcerative colitis, that surgery is a safe option. I've done all I can. And worrying about the 'what ifs' is not going to do me any good. And as for my own advice--after a friend commented on my ability to remain positive through all the disasters that have occurred, I first confessed that I am not always so positive. I have my down moments. But I generally try to remain positive. And without thinking much, I said, "You can choose to be upset or you can choose to be positive, but either way, s#*! is going to happen. But you get to choose how you handle it."

This surgery is going to happen. It needs to happen. And though it is very difficult to chose not to be nervous, I am going to try my very best to instead be excited. I am excited to be normal again and not be in pain 24/7. So I am thus excited to be cut up this morning. Things will go well, and everyone will see my elated post reporting good news either this evening or tomorrow morning. Please wish me luck and keep me in your prayers--Ash


*I did not have time to ask permission to speak about my friends, so I changed their names to protect their privacy

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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.