Deck the Halls with Awareness and Education - What is Endometriosis?

Grandpa: "I don't understand this endometriosis thing. Is it like a uterus malfunction or something?"

 You: “It's not a uterus malfunction, Grandpa...'” sighing, frustrated but determined to educate. “Endometriosis is a whole-body inflammatory, debilitating condition that's hijacking my life and literally billions of others around the world.”

Despite affecting billions of people worldwide, endometriosis remains shrouded in silence. The lack of discussion isn't due to a lack of effort — but rather the stubborn stigma, misconceptions, and outdated education methods that persist in our modern world. It's time to break the silence and shed light on this chronic condition that affects so many. Let’s dive in and spark the conversations that are long overdue.

Endometriosis shares striking similarities with autoimmune conditions — leading many researchers to classify it as an inflammatory, autoimmune disruption. Notably, a significant majority of individuals with endometriosis also have a concurrent autoimmune disorder(s), further supporting this connection.

Endometriosis is a chronic, inflammatory, systemic, and estrogenic-dependent disease. This condition may manifest genitally or extragenitally. The prevalence of endometriosis ranges up to over a BILLION individuals globally. Patients with endometriosis are more likely to develop ischemic heart disease (40%) and cerebrovascular disease (19%). The impact of endometriosis extends to multiple facets of life, such as obstetrical complications, silent loss of organ function and increased risk of ovarian cancer. Strained relationships, heightened depression and anxiety, financial difficulties arising from costly treatments for fertility or symptom management, and absence from work. (Nezhat.2024)

Endometriosis was also linked to a 31% higher risk of early death. (BMJGroup.21/11/2024)

Endometriosis is a leading cause of school absences among teens and pre-teens due to its potential for widespread and severe chronic symptoms. The condition's impact on daily life is profound, with individuals losing an average of 10 hours of productivity per week — making it challenging to maintain a job. Everyday tasks become a struggle, and for those with children, participating in family life is often hindered by symptoms. As a result, relationships with family, friends, and colleagues can become strained. Furthermore, finding adequate medical care can be a significant obstacle, exacerbating the challenges faced by those affected.

The only way to properly diagnose endometriosis is through a minimally invasive surgery called a laparoscopy. During this procedure, a specialist will look for lesions and once found are removed via excision and tested for confirmation.

Here's the thing — not all doctors have the training or expertise to diagnose and treat endometriosis. It's a complex condition that requires a deep understanding of its various forms and manifestations. In fact, only a handful of specialists worldwide have the knowledge and skills to properly diagnose and treat endometriosis — in its coat of many colors and appearances. Gynecologists and General Practitioners may not have the time or knowledge required to treat and properly diagnose a complex, misunderstood disease.

Looking at upwards of a billion estimated individuals suffering worldwide, you can imagine how many are being failed today. Notably, endometriosis has also been found in individuals born male, trans, intersex, fetuses, children and in animals — highlighting its whole-body impact beyond reproductive and gynecologic boundaries.

Endometriosis manifesting in diverse locations throughout the body with a myriad of forms — makes it a perplexing enigma. Currently, no medication can target the enigma directly, but some can help alleviate pain and symptoms. The disease's progression is unpredictable — with no discernible growth rate, and its impact varying greatly from person to person. While some may achieve remission with personalized treatment, others may not find complete relief from symptoms or pain despite surgery and further interventions. Additionally, dietary changes can help mitigate flares, but cannot single-handedly control the disease.

The most common symptoms are:

·        extremely painful periods

·        pain just before or after your period

·        pelvic pain at any time during the month

·        pain during or after sexual intercourse

·        difficulty getting pregnant (infertility)

·        nausea and vomiting

·        severe abdominal bloating

·        pain during ovulation

·        pain or bleeding with bowel movements

·        other bowel symptoms (ie, pain with bowel movements/ constipation/ diarrhea intestinal pain/upset stomach)

·        other bowel/gastrointestinal symptoms (acid reflux, loss of appetite, nausea with eating)

·        pain or bleeding with urination

·        other bladder symptoms (difficulty voiding/urgency/frequent urination/ incontinence)

·        pain in the lower back

·        pain in the groin area

·        heavy periods

·        more frequent periods

·        other, irregular bleeding

·        fainting/falling unconscious (due to pain)

·        pain that mimics appendicitis

·        pain that mimics celiac disease

·        pain that mimics Crohn’s Disease and/or irritable bowel syndrome

·        pain that mimics interstitial cystitis

·        fatigue

A few atypical or less well-known symptoms include:

·        no pain symptoms at all

·        acyclic chronic pelvic pain i.e., pain all the time or anytime, independent of menstrual cycles

·        hip pain

·        leg pain

·        back pain

·        vaginal pain

·        groin area pain

·        nerve pain (sciatic, pudendal, etc)

·        musculoskeletal pain

·        pain in the shoulders usually coinciding with menstruation

·        pain on or near the kidneys usually coinciding with menstruation

·        pain in the upper abdomen usually coinciding with menstruation

·        pain in the chest area usually coinciding with menstruation

·        pain on or near the lungs or breathing problems usually coinciding with menstruation

·        pain on or near the diaphragm or breathing problems usually coinciding with menstruation

·        pain on or near the liver usually coinciding with menstruation

·        acid reflux symptoms (GERD) usually coinciding with menstruation

Seeking expert care for endometriosis can be challenging, but there are resources available. Three common lists of specialists worldwide include:

- endofendoproject.org/physician-directory [America-focused, including pelvic floor therapists]

- icarebetter.com [worldwide search engine]

- theyellowhub.com [patient-recommended specialists and gynecologists]

Please review each website to understand how doctors are added to these lists. Due to limited trained professionals, travel may be necessary for proper care. Be cautious of misdiagnosis or inadequate treatment. When meeting a new doctor, these 6 questions can help you determine an individualized path best for you:

1) What are your beliefs regarding Endo?

Everyone has a belief system. But persistent myths & outdated misinformation causes a lack of effective care. Many Still think Endo is the uterine lining, shed through "Retrograde Menstruation". Cellular Analysis has shown more differences than we thought, making " Endometriosis is the endometrium" now considered misinformation. Getting pregnant does not handle the disease, birth control doesn’t treat or suppress lesions, Its all "symptom control". A Hysterectomy is also NOT A CURE, but relief of an added flare. Many doctors still working with this data are risking the health of thousands of patients.

2) How long have you been treating Endometriosis, & how do you treat Endometriosis itself?

An effective Dr in the Endo field should have around 3 years of treating the disease PROPERLY. New doctors pop up all the time, but treating this disease takes skill. They should not be handing out meds or using burning ablation methods. Meds are only a symptomatic option. Now ablation is a process using heat to burn of the top of the disease during a laparoscopy. This has many negative consequences, including not being able to recover a sample to biopsy & possibly covering deeply rooted endo lesions with scar tissue making it harder to find later. Excision removal should be the 1st step in treating this disease ITSELF, as it gets into the layers of tissue to remove any visual disease.

3) Are you Board Certified in FMIGS? If so, how much training was with Endo directly & are you able to remove it anywhere in the body if found?

As mentioned before, if the training isn’t there, the proper care & treatment are not going to be there. With ablation patients usually have immediate residual lesions & no decrease in symptoms leaving them more susceptible to being thrown onto medications. FMIGS training is offered in 53 hospital sites across the USA, 3 in Canada, 1 in Brazil, 1 in Columbia, 1 in Mexico & 1 in Ireland. It is simply "additional training" obtained to manage complex gynecologic disorders.

4) What kind of complex cases have you seen & treated?

Thoracic endo is one of the most top complex cases specialists work on. Sciatic endo & many other extra pelvic areas are also not as rare as you'd think.

5) What postop treatment is recommended?

Pain meds are given for a small amount of time after surgery, some even get a "Lidocaine Pain Ball" that has a direct line of meds going to the area worked on Pelvic Floor or a type of physical therapy may be recommended, as are certain nutritional approaches. The goal is to enhance the "big picture" approach to effectively treating the disease & any related gyn pathologies. This is done through excision removal & pathology testing.

6) How long should I expect to take time off work/school & be limited on activities?

This is a case-by-case answer due to the WIDE nature of Endo & what it requires. Generally, though, 3 to 6 weeks is the time frame allotted for recovery. If you're given less, find a new doctor, as they usually work with ablation. 2-3 weeks for basic activities, 6-8 weeks for possible full function. A minimally invasive surgery DOES NOT MEAN minimal recovery, just not as big incision for a slightly quicker healing time on the outside, inside work done takes the LONGEST to heal.

Remember, being in the hands of an untrained doctor can be dangerous. Take control of your care and seek out knowledgeable specialists.

Research reveals that cultural norms and social biases have significantly influenced the conceptualization and treatment of women's illnesses, including endometriosis. Pelvic pain has been historically attributed to women's supposed moral failings, weakness, or promiscuity, leading to delayed diagnoses and inadequate care. Women have been told that pain is a normal part of womanhood, and their concerns have been dismissed or misattributed to mental health issues, drug seeking, or other conditions like IBS or ovarian cysts.

Studies show that 75.2% of patients with endometriosis have been misdiagnosed with another condition, most often by gynecologists (53.2%) and general practitioners (34.4%). This highlights the urgent need for proper education and guidance surrounding endometriosis, a disease that has been misunderstood and stigmatized for far too long.

Despite the significant impact of endometriosis on individuals and society, research funding remains woefully inadequate. As of 2021, the total research investment amounts to a mere $29 million, which translates to a paltry $3.22 per person affected. This represents a meager increase of just $14 million since 2008, and a long-overdue boost in 2021 after previous funding cuts. The stark reality is that endometriosis research has been grossly underfunded for far too long, hindering progress and perpetuating the suffering of millions.

Aspira Women's Health Inc. recently received $10 million for endometriosis related care, from the US Government's $110 million ARPA-H funding initiative. Their goal is said to create a non-invasive blood test to guide treatment decisions, but this approach raises concern. How can a blood test with inconclusive results already being shown in other areas, replace surgical intervention, the gold standard, for diagnosis and treatment to even save a life with accuracy? It seems like a mismatch between funding and patient needs.

There is a vibrant community of support on social media and the internet — where individuals share their stories, become advocates, and help others find support. Here, I myself was able to break free from the silence and shame perpetuated by harmful ideas about endometriosis, I found myself again. Remember, you are not alone in your struggles - many people face similar challenges every day. Find comfort, connection, and empowerment by connecting with others who understand your journey.