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.