by Carolyn Noel, PAINS Webmaster
Like most women, prior to this month I had heard of endometriosis (endo) and I had some idea of what it was. I knew it was very painful and could cause infertility….and that was about it. Since March is Endometriosis Awareness, I wanted to take some time to learn more about this disease—not only to educate myself, but to prepare myself so that I could help spread the word.
I thought I would start by asking my girlfriends if they had ever had to deal with endometriosis and I couldn’t find anyone who either (a) had the disease, or (b) wanted to talk about it. This must mean it’s pretty rare, right?
Wrong. Endometriosis affects over 6 million American women and close to 90 million worldwide. The suspicion is that many cases are undiagnosed and that the actual number could be much higher.
Obviously, I have a lot to learn. I did some research online and interviewed the associate director of the Endometriosis Association. Here is what I learned.
What is Endometriosis?
Simply put, endometriosis is a disorder in which tissue that normally lines the uterus (called endometrium) grows outside of the uterus.
Endometrium normally stays in the pelvic region, growing on the ovaries, bowel and tissues that line the pelvis. During the menstrual cycle, the tissue grows, thickens and breaks down. The broken down tissue then becomes trapped in the pelvis area causing pain and irritation, scarring, adhesions (that bind pelvic organs together) and fertility problems. (Healthline.com)
What Causes Endometriosis?
In short, no one really knows. There are research studies going on now to try to determine the causes in hopes of finding new treatments and a cure. There seems to be a genetic connection and some studies have shown a link between dioxin (persistent organic pollutants) and the development of endometriosis. Some researchers theorize that endo is a result of “retrograde menstrual flow,” where some of the endometrium flows through the fallopian tubes into the pelvis. Others dispute this theory. Bottom line…more study is needed.
What are the Symptoms of Endometriosis?
- Pelvic pain (most often before and during period—can be daily)
- Pain with intercourse
- Pain with bowel movements or urination
- Excessive bleeding (during or between periods)
How is Endo Diagnosed?
According to the National Institutes of Health, the only way to be sure of a diagnosis of endometriosis is with surgery—most commonly with laparoscopy. Your healthcare provider may also use an ultrasound or MRI, but small lesions or adhesions may not show up with these kinds of tests.
What are the Stages of Endometriosis?
There are four stages or types of endometriosis: minimal, mild, moderate and severe. These stages are determined based on the location, number, size and depth of the endometrial implants. However, it should be noted that the stage does not necessarily indicate the amount of pain involved. Those with small lesions can still experience a great deal of pain.
What are the Treatments for Endometriosis?
While there is currently no cure for endo, there are treatments for the pain and infertility. The pain can be treated with various pain medications, hormone therapy and surgical treatments. Laparoscopic surgery to remove growths is often used to improve fertility, but the success rate is currently not clear. According to the NIH, IVF (in vitro fertilization) may be the best option to improve fertility.
With the rise in the knowledge about complementary medicine, more people are seeking these types of treatments in addition to adjusting their diet to improve their immune system and staying away from perfumes which can affect the immune system and exacerbate some health conditions like endo.
Warm baths and a heating pad (not at the same time) can help relax pelvic muscles and reduce pain. Regular exercise can also improve symptoms.
Why Should I Care?
Those are the facts, but if I don’t have endo, why should I take the time to learn more? To answer this question, I spoke with Carol Drury, Education Program Coordinator and Associate Director of the Endometriosis Association.
I have to say that during the process of researching this article, I was reminded of a conversation I had with a friend about suffering. Suffering is so much more than just the physical pain. I’ve learned that much like every other chronic pain condition that I know about, endo also involves that same sorts of emotional, spiritual and financial suffering.
When my daughter was growing up, she used to complain about her arm hurting and, like most moms out there, I told her what my mom told me. “It’s just growing pains.” To my shame and sadness, I was wrong, and my daughter had a tumor (benign) in her arm. Thankfully, I did notice there was a consistency to her pain and we had it checked.
If my daughter had endo in her teenage years and complained of pain, I most likely would have done the same thing and told her that we all have cramps.
Carol taught me the bottom line that we all need to know: Pain during periods that is not relieved by over-the-counter medication and/or a heating pad should not be ignored. Seek treatment!
The Endometriosis Association
The Endometriosis Association was the first organization created for those with this disease. Founded in 1980 by Mary Lou Ballweg and Carolyn Keith, it is now worldwide in 66 countries with information in 30+ languages.
The association has free brochures available to help in the outreach as well as an active social media presence. Membership is $35/year and includes access to a healthcare provider list and a crisis hotline – among other benefits.
Teens and Endometriosis
One thing I learned from my interview with Ms. Drury and from exploring the website is the effect on teenagers. As I mentioned, for those parents out there without an awareness about endo, many teens are left undiagnosed for extended periods of time (sometimes years).
The Endometriosis Association has a Family/Teen Program with specialized brochures and a DVD available for order. I watched a video on teens speaking about endo and was brought to tears by the suffering I saw. It includes the story of one young girl who committed suicide rather than endure the constant pain—and I’m sure that there are more stories like this.
Teens are especially vulnerable to mis- or un-diagnosis because they fall into a gap. There are very few pediatric gynecologists and most OB/GYNs are not experienced with kids. This can result in a gap in care. One girl on the association’s video shared that her symptoms began at 10 years old – before her period – and it went undiagnosed for years. Also, these types of ailments can be embarrassing for girls to talk about and they are more likely to be dismissed.
What is the Bottom Line?
Painful periods not controlled by over-the-counter medication and/or a heating pad are not normal. Seek treatment today…and spread the word about endo to everyone you know.
- Are you a teenager?, Endometriosis Association (PDF)
- Do I have endo? Interactive quiz: NogginLabs prepared for the Endometriosis Association
- Endometriosis & Menopause, Endometriosis Association
- Endometriosis Association Facebook Page
- Endometriosis Association website
- Endometriosis Association’s Carol Drury on Facebook, connect with other women with endo
- Endometriosis Health Center, WebMD
- Endometriosis, Healthline
- Endometriosis, Mayo Clinic
- Endometriosis, MedlinePlus, NIH U.S. National Library of Medicine
- International Pelvic Pain Society
- International Pelvic Pain Society, Endometriosis Handout (PDF)
- “Teens Speak Out on Endometriosis” DVD, Endometriosis Association