You have the power to decide – if you know all the options
Myths and misperceptions drive the delays in diagnosis and impose barriers to effective treatment of endometriosis and related conditions that cause pain, infertility, and other intrusive symptoms. We strive to provide individuals with accurate information about endometriosis and the treatment for endometriosis and related conditions so that they may engage in truly informed, shared decision-making with their health care teams.
What is endometriosis?
Endometriosis is characterized by the presence of tissue similar to the lining of the uterus (endometrial-like) located outside the uterus. Endometriosis lesions are different in both structure and behavior from the normal endometrium which is shed during a period. Endometriosis tissue can cause pain, infertility, and organ dysfunction due to inflammation, invasion into structures in the body, and scar tissue.
Endometriosis impacts approximately 1 in 10 individuals assigned female at birth and is rare in individuals assigned male at birth. Symptoms are often dismissed as “bad cramps” leading to an average 10 year delay in diagnosis.
What are the symptoms of endometriosis?
Symptoms vary and some women have only infertility
- Severe pain during menstruation
- Pelvic or abdominal pain not associated with menses
- Low back and/or leg pain
- Pain with sex
- Painful bowel movements
- Stomach problems including nausea, bloating, diarrhea and/or constipation
Less common symptoms
- Pain with breathing and/or shoulder pain particularly during menstruation may indicate diaphragm or lung endometriosis
- Coughing up blood or collapse of lung during period may indicate lung endometriosis
How is endometriosis diagnosed?
Although your provider may suspect endometriosis, surgery is required to confirm a diagnosis. The gold standard for diagnosis is a biopsy (cutting out the suspicious tissue during surgery) and confirmation by pathologist (a specialized physician the removed tissue under microscope).
It is important that a surgeon experienced in identifying endometriosis perform the surgery to reduce the possibility of missing the diagnosis.
It is also important that your provider is able to evaluate you for other conditions that may be contributing to your symptoms. Often individuals with endometriosis have other conditions that also need to be addressed. These include but are not limited to:
What causes endometriosis?
There are many theories that seek to explain endometriosis. It is most likely a combination of an embryonic origin (tissue that you were born with) plus other genetic and environmental factors. The commonly taught theory, that endometriosis is caused by the backflow of menstruation (“reflux menstruation”), has been largely debunked but still drives many of the treatments offered.
It is important to understand your provider’s view on the cause of endometriosis, because that might influence their treatment plan. Dr. Phillipa Bridge Cook explains why the theory of origins is important: http://www.hormonesmatter.com/endometriosis-fetuses-important
“Inaccurate theories about how and why endometriosis develops are widely accepted by medical practitioners, despite much evidence against them. Acceptance of these theories leads to the perpetuation of medical therapies that do not work. It is important to understand the origins of endometriosis in order to move forward and develop effective treatments for this devastating disease.”
How is endometriosis treated?
Treatment for endometriosis includes management of symptoms, surgical diagnosis, surgical removal of disease, and identification and management of additional conditions that cause pelvic symptoms.
The decision to have and the timing of surgery will vary. An individual may not want surgery or may have medical conditions that prevent them from having surgery (this is uncommon). An individual may wish to or need to delay surgery for a variety of personal, financial, or medical reasons.
Surgery is needed for a definitive diagnosis. A “working diagnosis” may be made and treatment options discussed based on that. However, many treatment options may not stop the progression of endometriosis, and some surgical options may not address endometriosis in certain places (such as around bowel, ureters, or diaphragm). It is important, if an individual does not have endometriosis surgically addressed, that they are followed closely. Endometriosis in certain areas (such as close to ureters) can present further complications that may not present symptomatically- damage can be done without a change noticed in symptoms. Ideally, follow up and treatment would be someone with expertise in endometriosis.
Treatment to eradicate (completely remove) the disease:
- Complete excision of abnormal tissue is the Gold Standard treatment and seeks to completely remove endometriosis (most often permanently) by surgically cutting out all of the disease at its roots.
- This method seeks to restore normal anatomy and preserve organs when possible.
- Recurrence rates are low when this procedure is done by surgeons skilled in identifying all forms of endometriosis and removal of endometriosis wherever it is found.
- It is important to identity and treat other causes of pelvic pain to have the best reduction/elimination of pelvic pain
Medical treatment – treats symptoms, but does not remove disease and can have significant long-term side effects. Medical therapy is an important part of endometriosis care, particularly for those whom surgery is not currently an option or have other ongoing problems or related conditions.
- Medication to treat pain such as non-steroidal anti-inflammatory drugs
- Hormonal birth control medications often given continuously to stop menstruation include: combined birth control pills, progestin only birth control pills, progesterone containing intrauterine device (Mirena® IUD), injectable progesterone (Depo-Provera®), implanted progesterone (Nexplanon®) (link to Medications)
- Hormonal medications to induce menopausal state include: GnRH agonist/antagonists (Orilissa®, Lupron®, Synarel®, Zoladex®), androgens (Danazol®)
Photo credit: Dr. Gabriel Mitroi, Wellborn Centre https://wellbornendometriosiscentre.business.site
Surgical treatments that do not eradicate disease
- Ablation surgery is common. This is a surgical technique that attempts to destroy (“burns”) the surface of endometriosis lesions. However, it can often leave disease behind under the ablated areas, and it also does not allow for tissue to be confirmed by a pathologist.
- Incomplete excision surgery
Credit: Dr. Gabriel Mitroi, Wellborn Centre https://wellbornendometriosiscentre.business.site
Additional therapies can help manage symptoms, treat common conditions that contribute to pelvic pain, provide emotional support and reduce stress:
What skills does my doctor and their team need to diagnose and treat endometriosis?
Endometriosis care requires holistic, multidisciplinary care. Who do you need on your team?
Primary care providers and generalist ob/gyn providers need to recognize symptoms, understand the skill set needed for specialty care so that they can make the appropriate referral. Your primary care provider or ob/gyn providers may also be able to provide you with some medications to manage your symptoms until you can see a specialist. Most generalist ob/gyn providers do not perform enough surgery on endometriosis patients to have the skill level of surgeons who specialize and treat primarily endometriosis. (link to Managing Your Relationship With Your Current Doctor by Donna Laux)
Surgeon – Identification of endometriosis and complete excision of disease requires a surgeon does a large volume of endometriosis surgery. Endometriosis lesions come in many shapes, colors, sizes and can present in numerous places in the body. Endometriosis, particularly deep infiltrating endometriosis (DIE), required a very high level of surgical skill. Endometriosis in some locations requires that an endometriosis surgeon partner with another specialized surgeon to remove lesions on the bowel, lung, sciatic nerve, or other locations.
Other specialists: Physical therapy, Nutritionist, Pain Management, Mental Health Therapist, and Others
Other conditions that can cause pelvic pain
Most individuals with endometriosis and pelvic pain have more than one condition contributing to their symptoms. These may include but not limited to:
- Interstitial cystitis/bladder pain syndrome (IC/BPS)
- Pelvic floor muscle pain/spasm
- Pelvic nerve pain
- Occult hernia
Common myths and misconceptions
- Endometriosis Research Center https://www.endocenter.org/do-you-have-endo/
- Endometriosis: A complex disease http://centerforendo.com/endometriosis-understanding-a-complex-disease
iCareBetter is a platform dedicated towards providing Endometriosis patients with access to doctors. All doctors listed in our directory have been verified by our expert panel for excision surgery of Endometriosis.
Endometriosis Research Center overview of endometriosis
Center for Endometriosis Care deep dive into endometriosis: Endometriosis: A complex disease
The Endometriosis Summit: The Endometriosis Summit’s aim is to “stop the minimization, myths, and misinformation to change endometriosis for everyone. The Endometriosis Summit’s Annual Town Meeting joins patients and practitioners on even footing to learn from each other without facades.”
- Blog posts on numerous topics of interest to individuals with endometriosis, their families/friends, and providers
- Video conferences with some of the top experts and thinkers in endometriosis care moderated by Dr. Sallie Sarrel https://www.facebook.com/The-Endometriosis-Summit-Patient-Practitioner-Town-Meeting-1456981957765827/
EndoWhat?: Endo What is a groundbreaking, bi-partisan movement dedicated to educating and empowering people with endometriosis while informing health care providers and
policymakers and holding decision makers accountable.
- Targeted designed to share with health care providers https://www.endowhat.org/healthcare-providers
- Award winning documentary about endometriosis
- School nurse educational program
Endopaedia is comprehensive, online resource on the origin, diagnosis, and optimal management of endometriosis, and represents the life’s work of world-renowned endometriosis excision surgeon and gynaecologist, Dr. David B. Redwine, M.D.
Center for Endometriosis Care Resource Library is a depth information on a wide variety of topics for patients, caregivers, and health care professionals
Neuropelvicology Dr. Marc Possover’s work “Neuropelveology is an emerging discipline focusing on the pathologies of the pelvic nervous system on a cross-disciplinary basis.”