Endometriosis Explained: How to Advocate for Your Care
Understanding Endometriosis
Endometriosis is a chronic, inflammatory condition that affects an estimated 1 in 10 women and people with uteruses of reproductive age. It occurs when tissue similar to the lining of the uterus (the endometrium) grows outside of the uterus, often on the ovaries, fallopian tubes, and other pelvic organs. This misplaced endometrial tissue behaves just like the uterine lining - it thickens, breaks down, and bleeds with each menstrual cycle. However, unlike the tissue inside the uterus, it has no way to exit the body, leading to inflammation, scarring, and the formation of adhesions and cysts.
The symptoms of endometriosis can be debilitating and wide-ranging, including:
Extremely painful periods
Chronic pelvic pain
Heavy or irregular bleeding
Pain during or after sex
Painful bowel movements or urination
Fatigue
Infertility
Despite its prevalence, endometriosis is often misdiagnosed or goes undiagnosed for years. In fact, the average time from onset of symptoms to diagnosis is 7-10 years in the United States, and even longer in the UK where there are long waitlists to see a specialist.
In this in-depth guide, we'll explore the complexities of endometriosis - from the latest research on potential causes to the challenges of getting an accurate diagnosis and finding effective treatment. We'll also provide actionable tips to help you advocate for your health and get the care you deserve.
Causes and Theories of Endometriosis
The exact cause of endometriosis is still not fully understood, but researchers have proposed several theories:
Retrograde Menstruation
One of the most widely accepted theories is that of retrograde menstruation. This occurs when menstrual blood and endometrial tissue flows backwards through the fallopian tubes and into the pelvic cavity, rather than exiting the body. It's believed that in people with endometriosis, the body is unable to effectively clear away this misplaced tissue, allowing it to implant and grow elsewhere.
However, this theory doesn't fully explain cases of endometriosis found in areas outside the pelvic region, such as the lungs, brain, or even the belly button. Clearly, there are other mechanisms at play.
Genetic and Hormonal Factors
Endometriosis appears to have a strong genetic component, with a 7-10 fold increased risk in first-degree relatives of those with the condition. Hormonal factors also play a key role, as the growth and breakdown of endometriotic lesions is driven by estrogen.
Some research suggests that certain genetic variations and hormonal imbalances may predispose some individuals to developing endometriosis. However, the exact genetic and hormonal mechanisms are still being investigated.
Immune System Dysfunction
Another theory is that endometriosis may be linked to immune system dysfunction. Studies have found abnormalities in the immune cells and inflammatory markers of those with endometriosis. This chronic inflammatory state may contribute to the growth and persistence of endometriotic lesions.
Embryonic Cell Transformation
Some researchers propose that endometriosis may arise from embryonic cells that transform into endometrial-like cells in locations outside the uterus. This could explain cases where endometriosis is found in atypical areas of the body.
Ultimately, endometriosis is likely a complex, multifactorial condition with no single, simple cause. The combination of genetic predisposition, hormonal influences, and immune system dysfunction all likely play a role in the development and progression of this disease.
Diagnosing Endometriosis
Obtaining an accurate diagnosis of endometriosis can be challenging, as the condition often presents with a wide range of symptoms that can be mistaken for other pelvic or gastrointestinal disorders. Additionally, endometriosis lesions can vary greatly in appearance, from small, subtle implants to large, infiltrative masses.
The gold standard for diagnosing endometriosis is a surgical procedure called a laparoscopy. During this minimally invasive surgery, a small camera is inserted through the abdomen to visually inspect the pelvic organs and identify any endometriotic lesions. The surgeon can then remove or biopsy the affected tissue for confirmation under a microscope.
However, many healthcare providers are hesitant to recommend a laparoscopy, as it is an invasive procedure that carries some risks. As a result, endometriosis is often diagnosed based on a patient's reported symptoms and a physical examination, rather than surgical confirmation.
This can lead to significant delays in diagnosis, as other imaging tests like ultrasounds and MRIs are often normal in those with endometriosis. In fact, studies show that the average time from onset of symptoms to diagnosis is 7-10 years in the United States, and even longer in the UK where there are long waitlists to see a specialist.
To help expedite the diagnostic process, some healthcare providers may recommend a non-invasive test called the Receptiva DX test. This endometrial biopsy can detect the presence of a biomarker called BCL6, which is associated with endometriosis. While not a replacement for surgical diagnosis, the Receptiva test can provide valuable information to guide treatment decisions, especially for those trying to conceive.
Ultimately, obtaining an accurate endometriosis diagnosis often requires persistence, self-advocacy, and finding a healthcare provider who specializes in the condition. As Dr. Karen Tang explains, "You deserve answers, and a lot of times people get sort of the brick wall response...but you know you're not alone, it's not in your head, you're not imagining it - there's something physically going on, and you deserve to get treatment."
Treating Endometriosis
There is no cure for endometriosis, but there are a variety of treatment options available to help manage symptoms and potentially slow the progression of the disease. The best approach often depends on the individual's specific symptoms, goals (e.g. pain relief vs. fertility preservation), and the extent of their endometriosis.
Hormonal Therapy
One of the first-line treatments for endometriosis is hormonal therapy, which aims to suppress ovulation and reduce estrogen levels. This can help shrink endometriotic lesions and alleviate pain. Options include:
Birth control pills
Progestin-only medications (e.g. norethindrone, medroxyprogesterone)
GnRH agonists (e.g. Lupron, Orilissa)
While hormonal therapies can be effective at managing symptoms, they do not treat the underlying disease. Additionally, long-term use of some medications like GnRH agonists can have side effects like bone loss.
Surgery
For those with more severe or treatment-resistant endometriosis, surgery may be recommended. The gold standard surgical approach is called excision, where the endometriotic lesions are carefully removed using specialized techniques.
Excision surgery is typically performed laparoscopically, using small incisions and a tiny camera to visualize and remove the endometriosis. This is considered more effective than the alternative approach of ablation, which simply burns or destroys the visible lesions.
Excision surgery aims to remove as much of the endometriosis as possible, including any deep infiltrating disease. This can provide significant pain relief and improve fertility outcomes. However, endometriosis is a chronic, progressive condition, so symptoms may return over time and additional surgeries may be needed.
Fertility Considerations
Endometriosis is one of the leading causes of female infertility. The disease can distort pelvic anatomy, impair egg quality, and create an inflammatory environment that interferes with implantation.
For those trying to conceive, fertility-preserving treatments like in vitro fertilization (IVF) may be recommended, either before or after endometriosis surgery. Some patients may also choose to undergo egg or embryo freezing prior to surgery to safeguard their fertility.
It's important to work closely with a reproductive endocrinologist who has experience treating endometriosis-related infertility. They can help develop a personalized treatment plan to optimize your chances of achieving a healthy pregnancy.
Advocating for Your Care
Given the complex and often misunderstood nature of endometriosis, self-advocacy is crucial when seeking diagnosis and treatment. Here are some tips to help you get the care you deserve:
Find the Right Healthcare Provider
Seek out a healthcare provider who specializes in endometriosis and has extensive experience diagnosing and treating the condition. This may mean going beyond your primary care doctor or general gynecologist and finding a specialist, such as a minimally invasive gynecologic surgeon or a reproductive endocrinologist.
You can start your search by checking the website of Dr. Karen Tang, a renowned endometriosis expert and author of the book "It's Not Hysteria." She also maintains an active presence on Instagram, YouTube, and TikTok, where she shares valuable information and resources.
Be Persistent and Advocate for Yourself
If your healthcare provider dismisses your symptoms or is unwilling to investigate further, don't give up. Endometriosis is often misdiagnosed or goes undiagnosed for years, so you may need to seek multiple opinions before finding the right provider.
Come prepared to your appointments with a detailed history of your symptoms, any previous treatments or tests, and a list of your concerns. Don't be afraid to ask questions and push for a thorough evaluation, including a referral to a specialist if necessary.
Join a Support Community
Connecting with others who understand the challenges of living with endometriosis can be incredibly empowering. Consider joining an online support group or local endometriosis organization to share experiences, get advice, and find resources in your area.
Following endometriosis advocates and experts like Dr. Lora Shahine on social media can also be a great way to stay informed and inspired. Dr. Shahine is a double board-certified reproductive endocrinologist and OBGYN who is passionate about educating the public on reproductive health issues like endometriosis.
Be Prepared for Your Appointments
Before each appointment, take the time to reflect on your symptoms, their impact on your daily life, and any questions or concerns you want to address. Consider keeping a symptom journal to track patterns and severity over time.
It can also be helpful to bring a trusted friend or family member to your appointments to take notes and provide an extra set of ears. This can ensure that no important details are missed and that your concerns are clearly communicated to your healthcare provider.
Navigating the complexities of endometriosis can be challenging, but with persistence, self-advocacy, and the support of knowledgeable healthcare providers and a caring community, you can take control of your health and find the relief you deserve. Remember, you are not alone in this journey.
For more information and resources, be sure to check out Dr. Lora Shahine's Baby or Bust Fertility Podcast, as well as her website and social media channels, including Instagram, TikTok, and Twitter.
