* Information in this article has not been evaluated by the Food and Drug Administration. This is not intended to diagnose, treat, cure, or prevent any disease. For educational purposes only.
Many of us have heard the term endometriosis - often shortened to endo - and may even know a friend, sister, or acquaintance that has it. But what is endometriosis? Endometriosis is one of the most common gynecologic problems and a leading cause of both hospitalization and hysterectomy (removal of the uterus).
It’s estimated that about 10% of reproductive-aged women have endometriosis!
And this estimate may be lower than the actual number of women affected. Research shows endometriosis is poorly understood and - because symptoms overlap with many other conditions and are sometimes broad or vague - this often leads to delay in diagnosis, or even misdiagnosis, for many women. In fact, the average time to diagnosis in the US is 9.3 years.
So, what is endometriosis?
Endometriosis is the presence and growth of endometrial-like tissue in locations outside of the uterus. It shouldn't be confused with endometrial tissue. Endometrial tissue (endometrium) grows throughout the cycle inside of the uterus. At the end of a menstrual cycle, the tissue either sheds (resulting in menstruation) or the person is pregnant and the tissue nourishes the growing baby.
The sections of tissue that make up endometriosis are called endometrial lesions. Common locations include the ovaries, Fallopian tubes, bowel, bladder, peritoneal tissue, ligaments or other structures in the abdominal cavity. However, these lesions aren't restricted to the abdominal cavity and can be found in other places throughout the body.
Endometriosis is poorly understood. Prior suppositions were that the lesions acted the same as endometrial tissue in the uterus - growing and shedding with the menstrual cycle. However, more recent research shows that the cells making up the lesions don't have the same number of estrogen and progesterone receptors as those found inside the uterus - they do still have some though, so are affected by hormones. Because of the lower number of receptors, endometriosis isn't known to bleed cyclically. Lesions may bleed or they may not, but the bleeding is usually noncyclical and unpredictable when it is occurring.
Lesions often cause scarring as they change over time, and they can also cause bleeding in the tissue they attach to. In addition, lesions are known to bind different organs, muscles, and ligaments to each other. Overall, endometriosis causes a lot of unintended things to happen in the body, causing pain and inflammation.
There are a lot of myths around endometriosis. We don't have the space in this article to cover them, so you can find some common myths and what the truth is here. See if what you've heard is true!
What causes endometriosis?
Despite the number of women affected, endometriosis is poorly understood and the exact cause of endometriosis remains unknown. Current research suggests that endometriosis is present in 10-11% of female fetuses, which corresponds with the number of adults estimated to have endometriosis. So it's likely present from conception.
What we know is endometriosis is
- Estrogen-dependent. Endometriosis tissue responds to the production of estrogen.
- Inflammatory. Progesterone is anti-inflammatory. Endometrial lesions produce estrogen and resist progesterone, lowering the affects of progesterone when it's present.
- Benign (non-cancerous). The symptoms women experience can range from non-existent (called silent endo) to severely debilitating.
- Related to numerous, complex factors.
What are the symptoms?
The most common symptoms of endometriosis involve PAIN! This can include any of the following:
- severe cramps with periods,
- chronic pain between periods,
- pelvic pain,
- painful sex,
- pain with urination or bowel movements, and
- low back pain.
Additional symptoms women may experience include long and/or heavy periods, constipation, bloating, insomnia, or lethargy.
Endometriosis is also one of the most common causes of infertility and up to 30-40% of women with endometriosis also have fertility issues. So while infertility is not a symptom, it can lead to the discovery of previously undiagnosed endometriosis.
How do you know if you have it?
If you have any of the above symptoms, I’d strongly encourage you to find a provider to discuss this with. Diagnosis delay is likely in part because pain is normalized and/or dismissed by patients and providers, or because we're often told that pain is normal in the female reproductive cycle. But significant pain that affects your quality of life is NOT normal! Symptoms of endometriosis can be somewhat vague and overlap with additional diseases or conditions, also making the diagnosis more challenging.
The gold-standard for diagnosing and treating endometriosis is laparoscopic surgery. However, it is possible to treat symptoms alone, and many providers will start with this approach. Even when looking for a doctor to diagnosis endometriosis, you should look for a specialist. This is because specialists will know where to look in case the lesions are incredibly small or hiding. A good place to start looking is Nancy's Nook's Find a Doctor, where the listed doctors have gone through extensive peer review, residencies specific to endometriosis, and more to gain their expertise.
How is endometriosis treated?
Traditional medical treatment includes pain medication, hormonal birth control (pills, patch, ring, IUD, implant, etc), additional prescription medications addressing hormonal and immune system components of the condition, and surgery. Expert excision surgery has the most success, but there are ways to treat symptoms while waiting for excision, or to treat pain remaining after excision.
The issue with some of the traditional approaches is they don’t necessarily treat the root cause of the problem.
So what can you do to support your body and address these root causes of endometriosis?
Diet & Lifestyle
Tempdrop has been lucky enough to have a Certified Nutritional Practitioner, write an entire article about using diet to support your body through endometriosis! I highly suggest reading it as a starting point. Here are a few non-dietary places to start, too.
You may also want to research supplements and herbs to help treat symptoms of endo. There are plenty of great options. As always, consult with your provider before starting or stopping any supplements or medications.
If you're looking for more resources on how to get an official diagnosis of endometriosis, or if you're looking for more options, check out Tempdrop's free endo guide.
If you have endo, you don't have to live with constant symptoms. Take control of your health - if you have to, do the research and come up with a plan, then talk to your provider about changes you'd like to make.