Research: Skinny Girls More Likely to Get Endo

Normally, a high body mass index (BMI) is associated with a slew of health problems and puts women more at risk for all sorts of illnesses ranging from diabetes to heart disease. Yet heavy women are actually less likely to be diagnosed with endometriosis, according to research published in the July 2013 issue of Human Reproduction.

Researchers from the University of Iowa Hospitals and Clinics followed 116,430 women from September 1989 to June 2011 and found that higher BMI was inversely associated with endometriosis. In fact, morbidly obese participants (those with a BMI of 40 or higher) were 39 percent less likely than normal-weight women to develop endo. And among women with fertility problems, those with a BMI of 40 or above were 62 percent less likely to develop endometriosis than those on the low end of the BMI range.

Of the women studied, about 5,500 were diagnosed with endometriosis, and researchers found that the women's current weight and their weight at age 18 was tied to their risk—the heavier the woman, the lower her chance of being diagnosed.

In news coverage of the study, researchers cautioned that this does not mean women should try to gain weight to reduce the risk of endo. It's possible that the strong weight association is because women with infertility tend to have higher rates of other hormonal conditions that may lead to higher weights, such as PCOS.

Knowing this association, however, may be useful as researchers look for underlying causes of endo. In addition, the researchers hope, doctors will be more aware of the increased likelihood of endo in leaner women, which might help them reach a quicker diagnosis.

Ups and Downs

Life is a series of ups and downs. If you're lucky, there are more ups than there are downs.

Daily life for someone with endometriosis, depending on severity, certainly has its share of health and emotional ups and downs. Some days you feel good—really good, normal even—and you might even forget that you have endometriosis at all. Some days may be so bad you can't even function, and you think you'll never survive this down. Other days are somewhere in the middle. Maybe you have a spot in the day where your digestion is out of whack or you're experiencing some pain, but for the most part you feel OK. If you're in that middle area, the symptoms come and go—rather unpredictably sometimes—but at least they do go away and leave you able to function and feeling alright.

Ups and downs in my life in general, beyond those caused by endometriosis, have kept me away from this blog for the past few months. Sometimes life just gets in the way of things, and that was the case with me. As I've mentioned before, I know stress triggers my endo symptoms, so when other parts of my life get in the way, I have to choose what to let go of for a while so I don't overburden myself. For a while, blogging (and keeping up with others' blogs and Twitter and the like) was one of the things that I had to dump off of my plate.

During those few months, however, I was able to continue with my mostly gluten-free diet (aside from a slip-up perhaps once a week when I allow myself a bite of a particularly lovely piece of bread or a tiny sliver of someone's homemade pie). And I've switched my birth control regime so I skip the non-active week of pills, which seems to have evened things out a bit more. I'm also getting to work out a bit more regularly and take more time for myself, which helps greatly.

I still have moments when I get twinges of pain or even a few hours here or there where I struggle with what's going on in my body. A few days a month I still battle some nausea, but some months it's nearly nonexistent. I'm getting much more sleep this summer than I do during the school year, though I still feel a bit fatigued at times. Overall I think I'm doing pretty well.

I continue to look into new ways I can lessen the impact endo has on my life and ensure I'm as healthy and happy as can be, and I hope now to get back to sharing some of what I've learned here. I've realized recently that endo is far from an isolated illness where you have a set list of symptoms that you can reliably identify. Besides the "typical" (if there is such a thing) symptoms of endometriosis, the disease causes or works in concert with a whole range of other illnesses and ailments, a few of which I never even realized were connected until recently. That's something I've been thinking about a lot lately and no doubt will be writing more about soon.

What ups and downs have you experienced recently with your endo?

Survivor's Guilt

When I started exploring information available about endometriosis, I was thrilled to discover such a large community of fellow endometriosis sufferers blogging about their experiences, sharing their daily joys and struggles on Twitter and Facebook, and finding myriad ways to support one another online. 

They've provided me with so much practical, real-life information. They've offered positive words and encouragement on days when I haven't been feeling well or am not sure what steps to do next to manage my symptoms. They've opened themselves up to share the most personal aspects of their lives with me and with others.

For this I feel grateful. I feel overwhelmed. 

Sometimes I even feel lucky. 

And this makes me guilty.

Let me explain.

I am lucky. Although I have a chronic illness with no cure and have already undergone a surgery that resulted in the removal of one of my ovaries, I'm still lucky. 

Even though I battle some form of endometriosis symptoms pretty much every day, I'm still lucky. I have days (more of them recently, now that I'm being careful about my diet and mindful of my symptoms) when I feel pretty darn good. When I can even forget for most of the day that I have endometriosis. 

But when I hop on Twitter and see all the women posting about their pain, about how they can't even go to work or leave the house because it's so bad, I feel guilty. I wonder why I am lucky enough to have so many good days when some of my fellow endometriosis warriors have so few.

I was able to conceive and give birth to a healthy, beautiful son without any trouble whatsoever, despite having one ovary and endometriosis. I didn't expect it to be that easy, but it was. 

And yet so many of my fellow endometriosis sisters struggle for months, years even to conceive. Some never do. And when I read about the sadness and the pain (physical and mental) they go through during infertility, I feel guilty. I wonder why I was so lucky when so many other women are not. 

I know I probably shouldn't feel guilty. Lucky, yes. Guilty, no. It's not as if I can do anything to control what other endometriosis sufferers are feeling. It's not as if my actions directly effect them. 

But still, I can't help it. I guess it's almost like having survivor's guilt in a sense.

So I've been trying to figure out what I should be doing or feeling instead. And I've decided this: It's OK to feel lucky, to feel good. On days when I feel good, I'll let the world know that, too. I shouldn't only communicate what I'm feeling when it's negative. Because even when you have endometriosis, there's a lot of positive. No matter what setbacks you might have in life, there's a lot of positive. 

I see other women post about their goods days regularly on Twitter, and their endo sisters are excited and repost those positive Tweets precisely because they are glad to hear that others are feeling good even if they aren't. So what is there to feel guilty about? Even that little bit of happiness, of feel-good energy, might help someone else.

And then, on those days when I don't feel so great, I'll seek out other women who are happy, who are doing well, who are having good days. I'll get a boost, I'll get motivation to go on, from them. 

That's why we're all vocalizing what we're feeling and doing and thinking anyway, right? To help ourselves and to help others. And that's nothing to feel guilty about.

Ah, Annual Exams

Today I made my annual (er ... semiannual ... oops) trip to my ob/gyn for an exam. In general, I avoid going to the doctor unless absolutely necessary. I've had too much insurance trouble, so I'm always leery of how a visit will affect my finances and my insurance coverage down the road. I've also had my fair share of experience with less-than-stellar doctors, so I'd rather avoid them all if possible.

That being said, I love my ob/gyn. She's young, down-to-earth, chatty. I go in for an exam and, despite the fact I'm laying there practically naked with my feet in stirrups, I feel almost as if we're on a coffee date. She's practical, too, though. She explains things clearly and honestly. Not to mention the fact she did a stellar job (as far as I can tell) removing my right ovary and the giant cyst attached to it a few years ago.

Today, I came into the appointment knowing I wanted to stop taking my Depo shot and get back on some form of birth control pill in the hopes it might help me manage my endometriosis. Plus I have some concerns about Depo—low bone density runs in my family, and I also know it can take longer to conceive after you've been on Depo than on other forms of birth control. It worked well for me while I was nursing my son, but I've known for a while it's time to move on to something else.

We briefly discussed the reasons why I wanted to stop taking Depo, what pills I'd been on before I got pregnant, what my endo symptoms were, and whether I was hoping to get pregnant again in the near future. Within minutes, my doc was outlining a plan.

And the new pill pack begins ...

She explained that this time rather than taking ortho-tricyclen, as I did for years before I got pregnant, she was going to prescribe ortho-cyclen. One reason is that it doesn't have the hormone fluctuations the tri version has, so should I decide to skip the placebo week of pills (so I can skip my period), I won't be on such a rollercoaster of hormone changes.

For the next couple of months, I'm going to take my pill packs as prescribed—placebo week and all. My doc wants us to get a sense of exactly what my symptoms are going to be like when I have my period, which I haven't done since before I was pregnant (so, almost two years ago now).

Then, if my symptoms continue to bother me or get worse when I start having my period again (cross your fingers they won't; but let's be honest, they probably will), she'll call in a new script for me so I can start skipping the placebo week of the ortho-cyclen.

If all goes according to plan, I shouldn't have to contact her after that until we're ready to start trying to have another little one, in which case I'll need to get on pre-natal vitamins again.

However, if my endo pain gets worse or changes drastically, I'm supposed to call her so she can set up an ultrasound, in the hopes that we can spot any new cysts that might get in the way of conceiving baby number two.

(Hopefully we don't have to worry about that—the doc said my lonely left ovary felt good this morning, so keep your fingers crossed!)

Coffe and Endo

I've been contemplating whether coffee needs to be the next thing to go from my diet. I'm almost four weeks into ditching wheat, but I've known all along that there are a number of other items endo sufferers avoid because of their potential to aggravate endometriosis symptoms. And one is coffee.

Photo via Flickr by rore

I've already been convinced by recent research on the benefits of a gluten-free diet for endometriosis sufferers, but I wasn't clear on why exactly coffee was a no-no, too. So before I made any rash decisions, I decided to investigate why I might need to ditch my favorite beverage.

(Because I love coffee. Although I don't necessarily need the caffeine—I had no trouble going off of it cold turkey when pregnant—the flavor of coffee, the act of drinking a hot cup, is a pleasure and one of the highlights of my often very early mornings. I like tea, too, and drink it often. But coffee is my morning must-have.)

In general, medical opinion on coffee has shifted in recent years. There used to be a laundry list of reasons why people should not drink coffee or should reduce their consumption, but now a lot of research has actually shown that coffee may have health benefits to the general population. (I say "general population" because, of course, people with certain illnesses or ailments may be the exception to that rule.)

The American Medical Association recommends that "moderate tea or coffee drinking likely has no negative effect on health, as long as you live an otherwise healthy lifestyle."

That's all well and good, but not really that helpful for me. I did find some interesting information on recent general health research on coffee in an article published in The Atlantic. For starters, as I mentioned before, researched has found that coffee may actually have a slew of benefits, including reducing the risk of type 2 diabetes in women, raising good cholesterol and lowering bad cholesterol, and even possibly helping you live longer. And a recent study even found that drinking four cups of coffee a day may reduce risk of endometrial cancer. Plus coffee contains antioxidants, which are substances that help remove potentially damaging oxidizing agents from our bodies.

Perhaps most interesting for women suffering from endometriosis, a recent study found that caffeine might function as a pain reliever—office workers who had back, neck, and shoulder pains reported less intense pain if they drank coffee before the experiment. And another small study found that concentrated amounts of caffeine can briefly reduce depression rates among women (the study looked at nurses in particular, who understandably are under a lot of stress).

So at this point in my research, I was thinking that perhaps not only was coffee not bad for me, but it might even help relieve pain and make me happier. But I knew I needed to dig into specifics on how coffee affects endometriosis sufferers before I jumped to any conclusions.

Photo via Flickr by amanda28192 

Unfortunately, the explanations I found in my small stack of endo books didn't help much. One listed a slew of general health reasons why coffee isn't good, but none really related specifically to endo sufferers—and, I discovered as I investigated coffee further, much of the health reasons cited in the book have since been disproved by research. Another endo book didn't mention coffee at all. 

One said to avoid coffee (along with black tea, hot chocolate, and sodas, although green tea is OK), but did not explain why. (Although in another part of the book, I did find a brief mention that drinking "a great deal" caffeine can result in a vitamin B1, or thiamine, deficiency, which can cause a slew of symptoms including gastrointestinal disturbances, constipation, loss of appetite, enlarged liver, water retention, fatigue, and more.) I'm not sure what constitutes "a great deal" of caffeine, though. The same idea—that coffee reduces the body's store of B complex vitamins and negatively affects liver function—also came up in Living Well with Endometriosis. According to the author, the problem for endo sufferers is that hindering liver function makes it harder for the body to get rid of excess estrogen.

Living Well with Endometriosis also mentioned a study that brought me closer to the type of information I was looking for. It cited research published in the October 2001 issue of Fertility and Sterility that found higher levels of estradiol (a form of estrogen) in women who drank at least 500 mg of coffee a day (equivalent of four or five cups). During the early follicular phase of their menstrual cycles, these women had nearly 70 percent more estrogen than women who consumed no more than 100 mg (less than 1 cup) of coffee daily.

Now I was getting somewhere. But I needed more information. That was just one study conducted more than 10 years ago. I wanted to know if there was more research, and particularly if anything had been done more recently.

Here's a rundown of what I found—which was actually quite a bit more research than I expected to uncover.

• A study published online in the February 2012 issue of the American Journal of Clinical Nutrition looked at the connection between caffeine consumption and estrogen levels in white, black, and Asian women. The results indicate that caffeine consumption among women of child-bearing age influences estrogen levels. Interestingly, it appears that caffeine effects estrogen levels differently among women of different races. Moderate caffeine intake—about two cups of coffee or 200 mg a day—lowered estrogen levels among white women; however, black and Asian women who drank the same amount of caffeine experienced elevated estrogen levels. And consumption of caffeinated soda or tea was associated with higher estrogen in all three groups.
• Research published in the August 2004 issue of Human Reproduction analyzed data collected in the framework of two case-control studies conducted in Northern Italy between 1984 and 1999 that looked at 504 women less than 65 years of age (median age 33 years) with laparoscopically confirmed diagnoses of endometriosis. The research found that green vegetables and fresh fruit resulted in a significant reduction in risk of endo, whereas high intake of beef and other red meat and ham was associated with the highest risk. Consumption of milk, liver, carrots, cheese, fish, whole-grain foods, coffee, and alcohol were not significantly related to endometriosis.
• The March 2002 issue of Annals of the New York Academy of Sciences discusses ways of furthering understanding of the epidemiology of endometriosis and briefly mentions caffeine use as a risk factor.
• As mentioned above, an October 2001 study published in Fertility and Sterility found that coffee use greater than 1 cup per day was associated with higher estradiol levels during a woman's early follicular phase.
• Prevalence of minimal or mild endometriosis was higher in women with caffeine intake of 300 mg per day or more in research reported in the Journal of Epidemiology in September 1998.
• An study published in the February 1998 issue of American Journal of Public Health found no significant association between caffeine consumption and fertility the 210 women studied, all of who reported on caffeinated beverage consumption and pregnancy status monthly. However, the study did find that drinking one-half cup or more of tea daily approximately doubled the odds of conception per cycle.
• A summary of epidemiologic literature on the effect of lifestyle factors including caffeine on female infertility published in the July 1997 issue of Journal of Epidemiology found that caffeine is one of many possible risk factors for various types of fertility.
• Researchers reported in the October 1996 American Journal of Epidemiology a positive association between caffeine and estrone (an estrogenic hormone) and an inverse association with bioavailable testosterone, suggesting that caffeine's reported association with several chronic conditions including endometriosis may be mediated by an effect on endogenous sex steriods. 
• A case-control study published in the Nov/Dec 1993 issue of Family Planning Perspectives focused on the association of caffeine consumption among women with infertility and found that women who consume high levels of caffeine (an average of more than 7 grams per month—the equivalent of about two cups of coffee per day) were more likely than other women to become infertile because of tubal disease or endometriosis. The investigators hypothesized that caffeine causes blood vessels to constrict.
• An examination of caffeine use in 1,050 women with primary infertility and 3,833 women who had recently given birth from 1981-1983 in the U.S. and Canada published in American Journal of Epidemiology in June 1993 found that upper levels of caffeine intake (5.1–7 grams or more per month) led to a significant increase in the risk of infertility due to tubal disease or endometriosis.
• A study from the September 1990 issue of American Journal of Public Health revealed that consumption of caffeine-containing beverages is strongly related to prevalence of premenstrual syndrome, based on 841 responses to a questionnaire probing menstrual and premenstrual health sent to female university students in Oregon. Among women with more severe symptoms, the relation between consumption of caffeine-containing beverages and premenstrual syndrome was dose-dependent (in other words, the more caffeine the women drank, the more severe the symptoms).

Photo via Flickr by @Doug88888

Whew. What do I make of all this research? Well, I'm not a doctor and I don't play one on TV. But it certainly seems as if there is a connection between caffeine intake and increased levels of estrogen in women. However, it appears that association is highest (not surprisingly) with high levels of caffeine intake. So I wonder if perhaps, at least for starters, my goal should be simply to cut back to only one small cup of coffee a day, given that at that level my coffee consumption (as I am a white female) may actually lower estrogen levels—or at the very least, from my research, it appears that small amount of caffeine does not appear to drastically increase estrogen levels.

For now, I think that's a great first step. And later? Maybe I'll cut out coffee altogether. But I can't deny the feel-good effect a hot cup of coffee has on me in the morning, so I'm not quite ready to ditch it.

Have you cut coffee or caffeine out of your diet completely? Have you seen a positive effect on your endometriosis symptoms as a result? Or have you decided not to ditch coffee yet? Please share!

Research: Antioxidant supplementation reduces endo-related pelvis pain

Taking antioxidant supplements (vitamins E and C in particular) can reduce chronic pelvic pain in women with endometriosis, according to research published in the March 2013 issue of Translational Research.

In the study, 59 women ages 19 to 41 with pelvic pain and a history of endometriosis or infertility were recruited to take a combination of 1200 IU of vitamin E and 1000 mg of vitamin C or a placebo pill daily for 8 weeks before surgery. The researchers administered pain scales and measured inflammatory markers in peritoneal fluid from both groups of patients and found that chronic pain improved in 43 percent of the women treated with antioxidants compared to the placebo group. Thirty-seven percent of the women who took the antioxidants also reported decreased dysmenorrhea (pain associated with menstruation) and 24 percent reported decreased dyspareunia (pain with sex).

The New Normal

When you have a cold, you know that rest and fluids and perhaps some cold medicine will help you recover quickly. Within a finite amount of time—maybe a few days, a week or two at most—you'll be back to normal again.

The same holds true for other ailments. Break an ankle, and although the recovery may take time and be painful, you know at some point in the future your ankle will be healed. Have a headache? Take some pain reliever, give it some time, and you'll be back to your old self.

But it doesn't work that way with chronic illnesses like endometriosis.

For starters, there's still a lot of uncertainty about what causes endo. Without knowing a cause, we can't do much in terms of prevention. Taking a flu shot, washing your hands frequently, and avoiding exposure to others with germs are all relatively easy preventative measures to take to reduce your risk of contracting the flu. With endometriosis, there are no such "easy" steps.

Even more importantly, though, endometriosis has no cure. Although there are things we can do to lessen our symptoms, endo is a constant in our lives that we can't chase away no matter how hard we try.

We just have to learn to live with it.

That's what I've been struggling with lately. My endo symptoms didn't really appear until about 3 years ago—and I had a nice reprieve when I was pregnant with and then nursing my son—so it's only now starting to sink in that this is something I am going to have to deal with, and dare I say accept, for the long-term.

"Feeling good" will no longer have quite the same meaning. Now it's "feeling good ... considering I have endo."

This isn't to say there aren't days when, for the most part, I do feel good. There are days when I can almost forget I have endo altogether. But most days lately, the symptoms are pretty constant. And I'm realizing I can no longer grimace and think, "It's OK. I'll be over it soon." Because at least as far as the endo symptoms go, I might not. Not now. Not for a long time.

The other thing that makes this particularly difficult—and perhaps different from having other chronic illnesses, where you know exactly what symptoms you'll experience and when—is that the nature of endo symptoms vary so greatly from day to day.

Take yesterday, for instance. First thing in the morning, I had my usual intense back pain, concentrated in one specific spot in my lower right back. It usually fades for a while late morning, comes back with brief ferocity once or twice throughout the day, and settles in again with more intensity for a bit at some point in the evening.

Then I had an occasional feeling in the area of my left ovary, a fullness and discomfort reminiscent of when I had the giant endometrioma on my other ovary. This is a rather new sensation, and honestly it makes me a little nervous that there's another cyst growing. Then, for a period of time, I also had this incredibly sharp pain in the area where my right ovary used to be. It was much different from the full feeling on the other side—more like someone was stabbing a little paring knife right into my pelvis in one specific spot, over and over.

Plus, of course, there was the general feeling of fatigue that seems to follow me through most days.

And that was just yesterday. Today and tomorrow may have some similarities, or they may be totally different.

So I have no choice but to get used to this state of not knowing what any given day will bring, of recognizing that this isn't a temporary condition. There is no end in site. Rather, this is just the way it's going to be now. I can try regulating the symptoms with medication, with diet, with natural therapies. I will, and hopefully that will make things better. But I'm probably never going to see complete relief. My health and body are probably never going to be back to the way they were before.

This is the new normal.

Friday Link Love: Gluten-Free Cooking Blogs

I've always been a voracious reader of cookbooks, cooking blogs, random recipes clipped from newspapers, you name it. I love to try new recipes, from good old home-cooked favorites to rather involved over-the-top creations with way too many ingredients.

Now that I'm adjusting my diet in the hopes of finding some relief from my endometriosis symptoms, rather than feeling stifled and limited in what I can cook, I'm discovering a whole new world of cookbooks and cooking blogs and random recipes from newspapers I might have overlooked before.

Cooking and eating can be a bit more challenging when you ditch gluten or dairy or eggs or whatever it might be you're thinking of eliminating because of endo. It's true. But cooking and eating can also become an adventure, where you're challenged in a good way—to try new ingredients and get creative and become incredibly thoughtful about what it is you're making and consuming.

I didn't really intend to hop on my soapbox before I shared my links this week, but I think I may have just done that. Sorry. It happens to me. Often.

Anyhow. Before I fully committed to eliminating wheat from my diet, I bought the cookbook Gluten-Free Girl and the Chef. I devoured it, not only because it has wonderful recipes but also because the authors tell a really great story, too. Cooking to me is so much better when it's not a chore but an inspiration, a tale unto itself.

Then I started pinning gluten-free recipes I came across on Pinterest.

And I started finding more and more gluten-free cooking blogs to follow. They run the gamut, from the sort that offer easy, on-the-table-fast meals with simple ingredients to those that are rather aspirational, five-star-restaurant-caliber affairs.

One cool thing, too, is that a lot of these gluten-free cooking bloggers are conscientious about not only gluten but also other typical allergens people might be avoiding. The Gluten-Free Girl and the Chef blog regularly recommends non-dairy substitutions for things. And Against the Grain has handy little icons at the top of each post that let you know when a recipe is sans wheat, nuts, dairy, gluten, etc. This can be incredibly helpful for women who are on the endometriosis diet.

If you're looking for some new food ideas, I suggest you check these out.

Gluten-Free Girl and the Chef
Against the Grain
This Gluten-Free Life
Discover Gluten Freedom
Gluten Free Cooking School

What other great gluten-free cooking blogs did I miss?

P.S. The photos are a sampling of the gluten-free recipes I've made recently. I promise to share some of them in detail soon!

Inspiration: Paint the Beauty and the War

"So build yourself as beautiful as you want your world to be. Wrap yourself in light then give yourself away with your heart, your brush, your march, your art, your poetry, your play. And for every day you paint the war, take a week and paint the beauty, the color, the shape of the landscape you're marching towards. Everyone knows what you're against; show them what you're for." — Andrea Gibson, evolution

I came across this quote on the blog of one of My Sister's best friends, and it was too good not to share.

Two Weeks Wheat Free

I'm going to admit this upfront: I figured removing wheat from my diet would be hard.

Even though I'd pinned some yummy-looking gluten-free recipes, read Gluten-Free Girl and the Chef cover to cover, and already was accustomed to eating a few gluten-free foods from stealing bites of Little Man's snacks, I still thought I'd miss all my usual wheat-filled treats.

But the great thing is, I really haven't. Since giving up wheat, I have still made chicken and dumplings, pizza, corn bread, spaghetti, muffins, and even snickerdoodle cookies. I've still eaten toast with my breakfast on occasion and have snacked on some yummy crackers. And I've even eaten out—quite a few times—and managed to find plenty of menu options that, even if they weren't labeled as gluten-free, likely didn't contain anything with wheat.

I know things won't go so smoothly. I know there will be times when I am dying for a bite of my favorite sugar cookies or when the fresh bread at a restaurant looks too good not to eat. I know eventually I'll come across some gluten-free recipes I don't like that well and I'll yearn for the "real" thing. I'm sure I'll spend many a nights at restaurants where the pickings are slim for someone who's avoiding wheat.

But right now, two weeks in, I can't complain.

It's too early yet to really know if ditching wheat is making a difference with my endometriosis symptoms. Part of the reason I stopped eating wheat when I did was because my symptoms were the worst they'd been since before I was pregnant.

Over the past few days, my symptoms have definitely improved. But that also could be because I'm at a different point in my cycle now, too. It's really too early to say with any certainty. The digestive issues that had become particularly troublesome have eased up. That, too, could just be a change in my cycle. But I'm guessing that might have something to do with the wheat.

I guess we'll see!

For those of you who have given up wheat, did you hit a point when you lost steam and desperately craved your favorite wheat foods? How did you fight off the cravings? At what point did you really start to notice a difference in your health? Please share your experiences—I'd love to learn from you!

Research: Increased risk of inflammatory bowel disease in women with endo

Women with endometriosis have an increased risk of developing inflammatory bowel disease, according to research published in the September 2012 issue of the journal Gut.

For an average of 13 years, researchers monitored the long-term health of more than 37,000 Danish women who were hospitalized with endometriosis from 1977 to 2007. They found that 320 of the women monitored developed inflammatory bowel disease—228 of which were diagnosed with ulcerative colitis and 92 with Crohn's disease.

Women with endometriosis have a 50 percent higher risk of developing inflammatory bowel disease than the general population. After restricting the study to those women with surgically confirmed endo, they discovered the risk jumped to 80 percent.

The researchers think that the diseases may share similar causes. Or it's possible that long-term treatment of endometriosis with oral contraceptives increases risk of inflammatory bowel disease.

Lizzie O'Leary on Endo

If you haven't yet, check out the Cosmopolitan.com article on Lizzie O'Leary and her battle with endo. I wish her the best as she continues her battle with her symptoms and hope that the Cosmo article and other stories about her struggle will help raise awareness of the illness and its effects on women.

She says in the article, "What I want people to know is that it's OK to talk about it." I hope that message comes across loud and clear—the more awareness we raise about the many women affected by endo, the more likely we are to see increased research, informed doctors, and an understanding and perhaps even supportive public.

Insurance Woes

I'm sure I don't have to tell you that the American health care system sucks. The quality of care keeps decreasing as costs keep increasing.

I can't even imagine having had my surgery or my son without insurance.

At the same time, insurance companies are near the top of most people's least-liked lists—mine included.

My very first job out of college was with an incredibly small company, so my company-provided insurance was an individual plan. From the start, I learned all about preexisting condition exclusions when the insurance company said they wouldn't cover: my back (I'd had back trouble and treatments for it in high school), my thyroid (because I once had a swollen gland on my neck that wouldn't go away for quite some time, so I had it checked out, only to have it go away on its own), my kidneys (because I had small kidney stones that required no treatment), and any allergy treatments (because I took prescription medication for seasonal allergies).

Ack. Can you imagine if I actually had something seriously wrong with me?

Fortunately, not long after that, the company grew rapidly and we were able to get group insurance.

But a few years later, when I left my full-time job to finish my master's degree and work as a freelance writer and editor, I once again had to apply for an individual insurance plan.

Fortunately, I was on the plan for many months before my ovarian cyst became known, so my doctor's appointments and my surgery to remove the cyst were covered. A few months after the surgery, we applied for maternity coverage, knowing sometime in the near future we'd want to start a family. I was flat-out denied because of my cyst and endo diagnosis.

Fortunately, not long after that, I ended up landing a job I loved (that had good benefits). So once we finally were ready to have children, I had maternity coverage.

And then (bet you never know where this is going), a while after our son was born, I went back to teaching part-time, freelancing part-time, and staying home with our little angel part-time. So, yes, I'm once again on an independent insurance plan.

I learned my lesson after the first few times and now pretty much don't go to the doctor for anything if I can help it, so I didn't have to report anything on my health insurance application aside from my cyst surgery and a breast lump I had to have biopsied (that was fortunately benign). Miraculously, all of that happened long enough ago neither the endo nor the breast lump were considered preexisting conditions that could be denied coverage. Whew!

Based on all of that (which only happened in the span of about 7 years), it should come as no surprise that I've been a supporter of the healthcare reform bill, optimistic about the fact that people with preexisting conditions will get the coverage they need and that women on individual insurance plans can get maternity coverage.

Yet last week I almost changed my tune, when I found out that multiple insurance companies weren't willing to offer me maternity coverage right now. My current insurer said it was because of my ovary, endo, and breast lump. When my dedicated insurance agent pressed them on why they weren't worried about those things enough to deny coverage of them when I first applied for my insurance plan, yet now they were listing them as preexisting conditions for denial of maternity coverage, the insurance company said it was because they'd had to make their guidelines more stringent since I first applied in August. Whatever.

So we decided to apply to other companies, big and small. They all denied me too, but not because of preexisting conditions. They said they denied me because of the new health care bill.

It turns out, insurance companies are now required to cover any children born to a woman who has their maternity coverage. So rather than risk getting stuck with sick babies, they apparently decided to stop offering maternity coverage until the rest of the health care law kicks in starting on Jan. 1, 2014 and they have to offer it. Or at least that's their excuse.

Yes, that's right. Even though I'm willing to pay double—or even more—per month than I am paying now for health insurance and am willing to wait an entire year before I even try to get pregnant (which guarantees the insurance company at least one year and 9 months of that gargantuan monthly rate—and that's only assuming I would get pregnant immediately), they're still not willing to offer coverage.

I started doing some investigating to find out what other options are out there and how things might change once the health care law (officially called the Affordable Care Act) is completely implemented.

It doesn't help me at all in this situation, but I did learn that some states (including Illinois, where I live), have state infertility insurance coverage laws that require coverage of infertility treatments, so if you are concerned about fertility coverage this site from the American Society of Reproductive Medicine is worth checking out.

Many states, including Illinois, also have Medicaid and other programs designed specifically to provide coverage to women who meet certain income requirements. Unfortunately, that doesn't help me either, but it is an incredibly important benefit offered to many women across the United States.

Finally, to bridge the gap between now and when the rest of the Affordable Health Care Act is rolled out in January 2014, people who have been denied coverage because of a preexisting condition, have been uninsured for at least 6 months, and can afford to pay insurance rates can enroll in the Pre-Existing Condition Insurance Plan (PCIP). Since I currently have insurance—just not maternity coverage—this doesn't help me, either. But I bet it's a lifesaver to others out there.

The best news, of course, is that beginning on Jan. 1, 2014, maternity care will be considered one of the 10 "essential health benefits" that most individual and small-group plans in the United States will be required to offer—and people who apply for insurance can no longer be denied or charged ridiculously high rates for preexisting conditions or maternity coverage. I'm not alone in rejoicing over this fact.

Once I finished fuming the other day and started to think about my current predicament a bit more, I realized perhaps it's for the best we were denied maternity coverage now. We had planned to start coverage Feb. 1. So in a year, when we could finally try to have a child, the Affordable Care Act would already have been in effect for a month.

Instead of forking over all that extra money for the next year, I guess I'll keep my cash and try to apply for new insurance coverage next January. With my luck, some sticky situation will come up that will somehow exempt me from maternity coverage again. But in theory, next year I should be able to get the coverage I need without paying exorbitant rates or dealing with a waiting period.

We'll see.

Friday Link Love

From time to time, I'd like to share posts from other bloggers that I find interesting, inspiring, or what-have-you.

I thought about making Link Love something I do every week on the same day, but I'm not going to commit to that, because then if I missed a week it would stress me out. And stress is an enemy of an endo sufferer.

This space is supposed to be a source of information and inspiration for you and a bit cathartic for me, so I don't want to go and mess that up with a set schedule. Still, on occasion I'll throw a few links your way in case you're so inclined to explore them.

Here's what resonated with me today ... 

Endometriosis and learning your levels of pain - from EndoHope

Coming Out of the Disease Closet - The Challenges of a Chronic Illness - from Hormones Matter

And a little bit of yummy ... Vegan, gluten-free apple tart (it looks absolutely divine) - from A House in the Hills

Happy Friday!

My endo story part 3: the pregnancy and beyond

After I recovered from the laparoscopy in which my right ovary and the giant cyst attached to it were removed, I thought very little of my endometriosis diagnosis. Why would I? I felt just fine, now that the discomfort from the big cyst was gone.

But in the fall of 2010, only a few months after my surgery, I started to notice a host of symptoms I either hadn't had or hadn't bothered to pay attention to before. I'd get twinges of pelvic or lower abdominal discomfort—often on my right side, but occasionally on my left. I had more intense cramping before, during, and after my period, which suddenly wasn't as regular as it used to be. (For years, I could tell you to within two hours the exact day and time each month my period was going to start. Really. But that wasn't the case anymore.) I had back pain, different than the back pain I'd experienced since being tackled and hitting my tailbone during a basketball game in high school. I just felt different a lot. Uncomfortable. Not me.

I started to notice that certain times were worse than others. Some of it related to my cycle, of course. But I also felt worse when I was stressed or not getting enough sleep or if I drank much alcohol.

January 2011 was one of my worst months. The Hubby and I took a (belated by more than a year) honeymoon to Hawaii at the end of January. It was a dream trip. We stayed at fabulous hotels. We spent lazy days exploring and walking on the beach and laying by the pool. We ate fabulous meals.

Yet I'd been bleeding off and on for weeks, was completely exhausted the whole time (more so than I should have been from the time difference between home and Maui), and on occasion grew awfully cranky for no reason. One night, we were supposed to eat at a restaurant that got rave reviews. But as we were headed toward it, a ridiculous rainstorm swept in. It was raining so hard there was no way we could sprint all the way to the restaurant we planned to go to, so we ducked into this cute little Italian restaurant, had a glass of wine, and decided to wait out the storm. When it didn't stop pouring and we grew hungry, we decided to stay and eat there.

It was the type of impromptu adventure I'd normally savor, but for some reason I just kept growing angrier and angrier at the change of plans. I was unhappy and knew I was being ridiculous, but that just made me even angrier. I had no idea why I couldn't turn my mood around, and ended up melting down at the dinner table. The Hubby was flummoxed, to say the least. So was I. My hormones were a mess, plain and simple.

Enjoying a wonderful honeymoon in Hawaii, despite a few health ups and downs.

After the honeymoon, I decided I needed to learn more about endometriosis and what I could do to regulate it. I had no intention of having another surgery if I could help it, and I also had no interest in trying any of the drugs I'd read about that could help keep symptoms in check, beyond the birth control pills I had been taking. They benefits just didn't seem to outweigh the drawbacks.

So I bought books about endo. I read everything I could about it. And I decided I'd pursue natural treatments. I didn't intend to cut anything out of my diet (I was too stubborn at that point), but I decided I'd at least try to reduce my consumption of wheat, dairy, alcohol, and caffeine and increase my consumption of fruits, veggies, and other healthful foods. I ordered essentials oils and a body brush so I could try some of the endometriosis self-help plan outlined in The Endometriosis Natural Treatment Program. I was ready to get serious about taking care of myself and ensuring endo didn't overtake my life.

And then—surprise!—I got pregnant.

When The Hubby asked about having kids at the beginning of 2010, I told him I wasn't quite ready and needed one more year. So after we returned from Hawaii in 2011, I didn't start a new month of my birth control pills.

We weren't in a hurry to have a child. And we were realistic about the fact that it might be difficult—or even impossible—to conceive given my single ovary and my endometriosis. We were taking a "let's just see what happens" approach to it.

What happened was I got pregnant almost immediately.

I had an inkling I was pregnant right away. I just felt different. Off. Not like normal. Perhaps because I'd been paying such close attention to my endo symptoms, I was in tune with my body. I spent about five days taking pregnancy tests, knowing I was pregnant even though the tests said I wasn't, before that telltale line appeared (very faintly).

When I told The Hubby, he was as surprised as I was. I don't know that he really believed me at first until he, too, saw the very faint line. How did we get so lucky to get pregnant so quickly and easily? I have no idea. It was a completely unexpected, welcome (yet surprising) blessing. (The Hubby, of course, took full credit for it.)

And so, ready or not, we were off, embarking on the great big frighteningly wonderful adventure of pregnancy and parenthood. I was incredibly fortunate to have an easy pregnancy. Of course I had the usual aches and pains and trouble associated with growing another human being, but I got off pretty easy compared to most. In fact, I loved being pregnant. I was happy. I was healthy. And my endo didn't bother me at all.

Little's Man's birth went off without a hitch too, aside from the fact that he was breech and had to be delivered by C-section. (If you're so inclined, you can learn a bit about the big day here.)

Meet our Little Man!

And then I was a mommy! Talk about a big, crazy, scary, exciting world that is. I was so consumed with nursing and caring for Little Man that I thought of little else for many months.

In the last few months of nursing little man, I did start to notice some rather sharp back pain returning and an occasional twinge in my lower right pelvis. But it was nothing very frequent or too much cause for concern. 

While I was nursing, my endo symptoms were mostly absent.

Once I stopped nursing, though, things began getting increasingly out of whack, to use a rather scientific term. The pain and discomfort have gradually increased each month. I've experienced more bloating and digestive issues than I remembered having before. The strange thing is, I haven't even really had a period since before I had Little Man. I went on the Depo shot after my six-week postpartum checkup, and because of it, even after I finished nursing, I didn't get my period.

Yet my endo symptoms kept increasing. Now, the last few months, I have had a bit of spotting, and plenty of cramping and other issues, but I still haven't really had a period. I've been exhausted. More tired even than when I was getting up every 2 hours or so each night to nurse Little Man.

This body of mine is a strange, strange place, I'm realizing.

As the pain and discomfort and bloating and digestive issues and such have increased, so has my resolve to get serious once again about minimizing the effect my symptoms have on my life. This is particularly important to me now, when I can't be slowed down by back pain or repeated trips to the bathroom or exhaustion or anything else. I have a family that needs my love and attention, I have work that has to be done. I have to be healthy to be me.

Previously: The surgery and The cyst.