“I only got the diagnosis by accident. The doctor said ‘Have you ever been diagnosed with endometriosis?’ I said, ‘no,’ and she moved on.”
This was the experience of our very own team member here at Femi Secrets, Heather Parker. “I went to the doctor every day for a month before I got the diagnosis… it had just gotten to a point where I could not function. They misdiagnosed me several times. I had no idea what [endometriosis] was other than it caused painful intercourse. I went home and Googled, and I had EVERY SINGLE symptom. So, I wish I would have known what endometriosis was.”
Did you know that endometriosis affects 1 in 10 women of childbearing age? It affects nearly as many women as breast cancer and yet, it’s still largely shrouded in mystery. If someone asked us to explain what it is and the effects it has on the body, we likely couldn’t. Yet it’s a common health risk for women. So, let’s discuss the key takeaways of endometriosis that we need to know for our own health and what the many women living with the condition would like us to know.
How do you get endometriosis? And what does it mean?
Endometriosis is a condition that happens when tissue similar to the lining of the uterus grows outside of the uterus. This causes a chronic inflammatory reaction that may lead to scar tissue. One common misconception about endo is that it only affects reproductive organs. However, it is primarily found in any of the following:
- The thin membrane that lines the pelvis (peritoneum)
- The recto-vaginal septum
- The bladder
- The ovaries
- The bowel
“The endo was all over my ovaries, my bladder, my bowels, inside my uterus and outside… it was starting to bind my organs together.”
According to the World Endometriosis Society, it can even be found on the diaphragm or in the lungs. However, this is very rare.
Anyone with a menstrual cycle can get endometriosis, but it’s much more common for women in their 30’s and 40’s. Just like with PCOS and fibroids, there is no direct known cause of endometriosis. However, researchers have found that retrograde menstrual flow is the most likely cause. This means that some of the tissue shed during our periods escapes into other areas of the body. And of course, genetics likely play a large role in who develops endometriosis.
The Stages of Endometriosis
There are 4 stages of endometriosis ranging from minimal to severe. As classified by the American Society of Reproductive Medicine (ASRM,) minimal means there are few lesions, while severe means there are many deep lesions and cysts on one or both ovaries. However, the stage of endometriosis does not directly reflect the pain level or the presence of symptoms. Even stage 1 could be incredibly painful and present many symptoms of the disease.
How is Endometriosis painful?
“I wish I would have known that the pain I was feeling monthly and nearly every day was NOT typical. I thought every woman was suffering, and we were just all tough. But I learned just last year after my diagnosis that most women feel very little pain. We don’t talk about it.”
Essentially, the pain in endo is caused by tissue being where it does not belong in your body. These growths can actually swell and bleed (just like our uterus lining does during our periods.) Because this happens in an area where it cannot easily escape our body, it can cause swelling and intense pain.
Can you get pregnant with endometriosis?
Endometriosis has many symptoms including painful periods, chronic pain in the lower back and pelvis, pain during sex, bleeding or spotting between periods and digestive issues. But one of the most common symptoms that we hear about is infertility. That’s because researchers believe infertility may affect as many as 1 in 2 women with endometriosis. However, many women living with the disease can and do get pregnant (though it may be more difficult) and give birth to healthy babies.
Is there a cure for endometriosis?
“I was 35 and was dealing with the symptoms of menopause (trying to figure out hormones during a global quarantine) because my first surgery was not successful, and had to get a full hysterectomy and oophorectomy (removal of Uterus and Ovaries.)”
As you can likely guess, there is no cure for endometriosis at this time. But there are many treatment options for women including hormonal birth control and other medications and surgery to remove endometriosis patches. If you’re trying to get pregnant, your doctor may recommend a surgery to increase your chances.
“I wish I would have known how to prevent it and have never used tampons or the health risks associated with any of it. I just wish I would have been appropriately educated because then I would not be having to use artificial hormones every day to prevent my body from crashing into menopause.”
While you can’t prevent endometriosis, you can lower your chances of getting it by lowering estrogen levels in your body. Ways to achieve this include:
- Exercising regularly
- Talking with your doctor about hormonal birth control options
- Avoiding large amounts of alcohol and caffeine
Endometriosis and Tampons
Some researchers found that dioxins (a group of highly toxic chemical compounds found in trace amounts in tampons) led to an increase in endometriosis in monkeys. However, no conclusive evidence has been found for the same result in humans and some researchers have found conflicting results. At this time, there is no conclusive evidence to suggest that tampons cause endometriosis in humans. However, tampon insertion can be painful for women suffering from endometriosis, so pads and period underwear are often better solutions for women who have this condition.
Living with Endo – Your life is still yours. You are not alone.
For some women with mild endometriosis, symptoms will go away with time. Many women also find that symptoms recede with menopause. For a lot of women, endometriosis is something they live with day in and day out for many years and it can feel daunting, overwhelming and scary.
“It was a very emotional time where I felt like I wasn’t a woman anymore and it just all sucked.”
Remember that you are not alone and your mental health is just as important as your physical health. Talk to your doctor about your health experiences, but also talk to your friends. Maybe someone you know has endometriosis and you never even knew it. Many celebrities have spoken out about their own experiences with endometriosis showing other women just how common it truly is, despite feeling isolating.
Celebrities who have spoken out about their experience with Endometriosis
“I know how excruciatingly painful it can be and how discouraging the disease can be. To feel like it’s gonna limit you because of how debilitating it is … To maybe be worried about ‘never having kids,’ or dealing with crazy treatment suggestions … Finding out that I have endo was the most bittersweet moment because it meant I wasn’t crazy!” – Halsey
“It turned out I ruptured a cyst that was on my ovary. I didn’t know, but I have endometriosis. I’ve apparently had it for a long time because I’ve had this pain for about the last five years. It hasn’t been as bad. Up till last week, I let it go and I was always too busy to get it checked out… Endometriosis is a common thing for women. I was like ‘thanks mom for giving me my great life—and endometriosis.’ I said that jokingly. My sister who has five children is going in for the same surgery in a couple weeks.” – Julianne Hough
Actress Tia Mowry had two surgeries after her diagnosis so she could possibly get pregnant. She stated it made her feel “out of control” and the thought of not being able to have kids was an “immediate fear.” She now has two kids.
There are many more celebrities and women all over the world living with endometriosis. It doesn’t look any certain way and it’s not the same for everyone. Talk with your doctor if you’re experiencing symptoms and know that there are solutions.