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!)

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.

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!

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.

What is endometriosis?

Endometriosis is a female health disorder that occurs when the lining of the uterus (called the endometrium) grows outside of the uterus on other organs such as the ovaries, fallopian tubes, outer surfaces of the uterus, and lining of the pelvic cavity.

In some cases the endometrial tissue implants will also grow on the bowel, rectum, bladder, or even other areas of the body.

This displaced tissue thickens, breaks down, and bleeds with each menstrual cycle. Tissue around the implants can become irritated and eventually may develop into scar tissue or adhesions (which bind organs together). 

The symptoms of endometriosis are many and vary from woman to woman, but may include any combination of the following:

• Painful menstrual cramps
• Chronic pain in the lower back and pelvis
• Pain during or after sex
• Intestinal pain
• Painful bowel movements or urination (particularly during menstrual periods)
• Spotting or bleeding between menstrual periods
• Infertility
• Fatigue
• Diarrhea, constipation, bloating, or nausea (particularly during menstrual periods)

According to the U.S. Department of Health and Human Services, recent research has shown a link between health problems in women with endometriosis and their families, which can include:

• Allergies, asthma, and chemical sensitivities
• Autoimmune diseases (such as hypothyroidism, multiple sclerosis, and lupus), in which the body’s system that fights illness attacks itself instead
• Chronic fatigue syndrome (CFS) and fibromyalgia
• An increased likelihood of getting infections and mononucleosis
• Mitral valve prolapse (a condition in which one of the heart's valves does not close as tightly as normal
• Frequent yeast infections
• Certain cancers, such as ovarian, breast, endocrine, kidney, thyroid, brain, and colon cancers, and melanoma and non-Hodgkin’s lymphoma 

Estimates on the number of women affected by endometriosis range from 3 percent to 20 percent. 

It's hard to pinpoint a solid number, in part, because many women who have it do not have any pain or symptoms. Even some women who later discover they have many endometrial implants have no idea until they try to become pregnant and have difficulty conceiving. In other women, however, the symptoms can be quite severe—even if they only have a few endometrial implants.

There is no known cause of endometriosis, although there are numerous theories as to why some women suffer from it while others do not. That's something we'll explore later.

In the meantime, just know that if you have endometriosis, you are not alone. And although there is no cure for this disease, there are steps you can take to live a healthy, happy life. By getting informed, you're taking that valuable first step.

Photo: Womenshealth.gov