Saturday, March 30, 2013

Endometriosis Awareness Month

March is Endometriosis Awareness Month, so I wanted to share a bit more about this condition that affects women.
What it is
Endometrium refers to the tissue that naturally grows inside the uterus. It functions as a lining for the uterus, keeping the uterus separate and safe. During a woman's cycle, the lining thickens so as to prepare for the implantation of an embryo. If this does not occur, a woman sheds that lining and a new cycle begins.

Endometriosis occurs because of over-production of that tissue. It is a disease in which clumps of endometrium tissue (called implants) grow elsewhere in the body, typically in the pelvic region but sometimes beyond that.

The severity of endometriosis varies among women. Doctors classify the stages of severity from Stage 1 through Stage 4.

What it Really is
Endometriosis causes more than a bit of cramping each month. Those implants growing outside the uterus can cause excruciating pain, as in I-can-hardly-stand-up-and-move-around pain. They're not supposed to be there, afterall, and our bodies don't typically do well with cells and tissues just growing wherever they please. Pain often goes beyond abdominal cramping: usually back and leg pain is severe and accompanied by nausea and even vomiting. Anti-inflammatory medications help, but the relief is short-lived.

A woman's ovaries are usually hit the hardest with endometriosis. That annoying tissue growing on the ovaries may create a type of blood-filled cyst called an endometrioma. These cysts can get quite large and are incredibly painful and damaging.

For many women, the pain is just the beginning. The growth of the tissue may actually cause organs to adhere to the abdominal wall. Scar tissue can build up throughout the abdominal cavity, especially on the ovaries and in the fallopian tubes. Fallopian tubes may be obstructed altogether or damage to those all-important cilia may prevent an egg from traveling through the tube. Endometriosis can lead to poor egg quality (diminished ovarian reserve), and since short menstrual cycles correlate with women with endometriosis, problems with ovulation may also occur. There is even research indicating that implants (specifically those pesky endometriomas on the ovaries) release substances that create a toxic environment. Whatever endometriosis touches can be damaged, even the uterus itself, making an implantation more difficult. All of this can lead to perhaps the most painful effect of all: infertility.

Endometriosis is a chronic disease with no cure (at this point). There are treatments to help the pain and surgical options to correct or prevent damage, but there is no fix-it drug or surgery. And the reality is, doctors don't perfectly understand why it happens or what all the implications really are. That's always a bit unsettling as a patient!

What it Really is to Me
Endometriosis has likely been part of my life since I was an early teenager. I was one of those girls who experienced such severe pain and nausea that I would miss school (with my mom knowing and encouraging it)--and I hated missing school. Because most of my friends experienced only minor cramping during their cycle, I felt that no one understood just how sick I was, and I would say I had the flu to offer a valid excuse. I went to doctors, but the only medication I was ever prescribed was ibuprofin and birth control. Things only became worse as I got older.

Because you can't have a definitive diagnosis of endometriosis without having a laparoscopy done, it wasn't until January of 2011 that I finally knew how severe my case was. My ovaries were adhered to my abdominal wall and a massive endometrioma obscured my right ovary. There was large amount of scar tissue and likely damage inside my fallopian tubes. Even though the laparoscopy helped with the pain, it wasn't able to undo what was already done.

Endometriosis has meant about seventeen years of pain and discomfort, but the greatest heartbreak has come in the last five years. Endometriosis is the likely culprit behind my diminished ovarian reserve, hormonal imbalances, and therefore infertility.

Sometimes having endometriosis can seem like an uphill battle - there is no treatment that can cure it or undo the damage that's been done. There are days when I'm so frustrated with how my body is functioning--or isn't functioning! And because endometriosis is largely either unknown or misunderstood by the public ("extreme PMS"), I can't always express honestly what I'm feeling. But it is important for me to remind myself that it truly is a disease and it has had major implications in my life, my husband's life, and my family's life. And even though it can be downright depressing at times, I know that there is hope. I know that God cares for me even in this, and He has a plan for my life.

The Good even with the Ugly
Endometriosis is ugly -- literally and figuratively. (Just google it to see some hideous photos!) What is positive, however, is seeing a greater awareness now than there was even ten years ago--and thanks to some great organizations, this awareness is growing. Girls can get treatments earlier to prevent the spread of that darn tissue, which is a huge step from where I was as a teenager. Laparoscopy technology is far better than it has ever been, and doctors are more willing to perform laparoscopies sooner rather than later. In fact, doctors are more knowledgeable about the condition and more and more of them are specializing in this sector of women's health. That's amazing!

If you think you may have endometriosis, take control of your body and health. See a doctor, and if possible, find one who specializes in women's health and fertility. Feel free to contact me, and I'd be happy to refer those doctors in our area who have been so knowledgeable and helpful.

And if you know someone suffering from endometriosis, give her a hug this month -- you still have two days to do it! :)

For more information, check out the following sites or articles:
The Endometriosis Association The Global Forum
Endometriosis Fact Sheet (from
Laurence A. Jacobs, M.D. "How Does Endometriosis Cause Infertility?"


  1. Thank you for posting this!! After my surgery in December of 2010 I was diagnosed with somewhere between a stage 2 and stage 3 endometriosis. Not too bad, but still finally gave me an answer for all my pain. I find it hard to believe that it only effects 2-4% of women, do you think that is just because the only way to diagnose is through surgery and most women don't actually have the surgery done?

    1. Yeah, I agree that 4 percent seems very low, especially when another site I jumped to said 10. I think the stat may be due to the fact that women don't get it diagnosed or perhaps because only a certain age group have it. Maybe the statistic was for more severe endometriosis? I'm really not sure, but I too would bet it affects a lot more people than that. I would bet that statistic will grow over the years as more and more women recognize it earlier.

      Isn't it strange that a diagnosis (and therefore an answer) can help?! I felt the same way when I had my diagnosis finally.

    2. I had this as a guess-diagnosis based on the severity, type and location of the pain I had for, well, my whole life until about 4 years ago. My doc showed me a chart and told me how endometriosis is actually VERY common, some HUGE number that I don't remember have some symptomology, and like you said Candace, get stuck in the "extreme PMS" category. Most people who have it don't know, some who have it don't even have symptoms. But only like 2-4% experienced fertility problems, could benefit from surgery, etc. For me, he just suggested we start trying to get pregnant (even though it was a couple years ahead of our "schedule"), because 1, you don't know you have a problem until you know you have a problem, 2, if you have a problem, dealing with it earlier is better than later, and 3, getting pregnant can "reconjigger" the body and seriously relieve endometriosis. For us (praise the Lord) we quickly found we were not suffering from infertility, and since that first pregnancy, I've never had the pain I suffered from for all of those years. Prayers for you and Robby during this journey!!

    3. Hey Ashley - thanks for stopping by! Yes, I've heard larger stats as well. I have been wondering recently, though, if statistics are higher in certain countries? Just a guess, but I wonder that. I've heard that a pregnancy can help endometriosis for the same reason that birth control pills can help. The extra progesterone stems off the growth, apparently, and the lack of estrogen doesn't "feed" the endometriosis. Praise God that you didn't have infertility as an effect of your endometriosis! I actually know plenty of women who suffer from endo but have gotten pregnant surprisingly "easy"!

      Congrats on your third to come, by the way! What a blessing!

    4. It might be lower then in countries where girls tend to get pregnant younger, closer to teenage years, since they don't give the scar tissue as long to expand. But like you said, even here, our stats are guesses, because most people don't get diagnosed. And thanks! Both of Shane's siblings have struggled for years and years with infertility (although one of them just got an amazing surprise a few months ago and discovered they're expecting), and although we've hurt with them and prayed with them, it's also helped us become aware of how amazingly blessed we have been in this!

  2. this was SUPER informative candace! i only had a teeny bit of knowledge on the subject but i find this pretty fascinating. here is a "hug" through cyberspace! :)

    1. Hug received, Marisa! Thanks :)

    2. Reading your experience is eye-opening. I just didn't get why you stayed home all the time. Luckily, mom knew that you had something terrible going on and was there to believe you.

    3. You're right about Mom...I never thought of that!