From diagnosis delays to treatment options, find straightforward answers to the questions you have about endometriosis.
From diagnosis delays to treatment options, find straightforward answers to the questions you have about endometriosis.
Endometriosis is a systemic, inflammatory condition characterized by tissue similar to the lining of the uterus growing in other parts of the body. Endometriosis has been found in every organ. It is not simply a menstrual disease, yet is often mischaracterized as such, even by reputable sources.
Endometriosis affects approximately 1 in 10 people born with female reproductive organs. Common symptoms include, but are not limited to, pelvic pain any time during the month, a wide range of GI symptoms, urinary symptoms, fatigue, debilitating periods and more depending on where the endometriosis lesions are located in the body.
Symptoms often start early in life, but due to cultural taboos, misinformation and a historical lack of emphasis in medical education, they may be ignored or misdiagnosed by caregivers, healthcare consumers and practitioners alike. The average diagnostic delay is 7-10 years.
Endometriosis symptoms may begin as early as when puberty starts. Endometriosis symptoms can present before menstruation, during menstruation, and/or after menstruation. An estimated 70% of teens with chronic pelvic pain go on to be later diagnosed with endometriosis.
Red flag: If you or your patient regularly feels pain during or around periods, and this pain is bad enough to interfere with usual activities, this is a red flag - it is not normal and should be investigated further as soon as possible. (If you do not have this, it doesn't mean that you don't have endometriosis).
Risk factors for endometriosis include a mother or sister having the disease (7x increased risk), early onset of menses, short or frequent menstrual cycles, Mullerian abnormalities, autoimmune conditions and more. However, many people develop endo who have none of these risk factors.
Hysterectomy is not a cure for endometriosis. A disease characterized by tissue found outside of the uterus is not cured by removal of the uterus, ovaries and/or tubes and cervix. Over 100,000 hysterectomies are performed each year in the United States for endometriosis and most of them are unnecessary. Neither is pregnancy a cure for endometriosis.
People with endometriosis need an individualized, multi-disciplinary treatment plan that may include specialized, incredibly difficult surgery. Most gynecologists are not trained in advanced endometriosis cases. Drug therapy may suppress symptoms, yet it does not eradicate endometriosis. Patients should be referred to an endometriosis specialist.
People with endometriosis have an increased risk of co-morbidities including allergies, asthma, and chemical sensitivities, autoimmune diseases such as multiple sclerosis and lupus, chronic fatigue syndrome and fibromyalgia, and certain cancers, such as ovarian and breast cancer.
Endometriosis often reduces quality of life and contributes to psychological distress. Unnecessary delays in diagnosis and gaslighting contribute to the negative mental health impacts of the disease. A holistic approach to care including mental health support can improve quality of life.
Endometriosis is a systemic, inflammatory condition characterized by tissue similar to the lining of the uterus growing in other parts of the body. Endometriosis has been found in every organ. It is not simply a menstrual disease, yet is often mischaracterized as such, even by reputable sources.
Endometriosis affects approximately 1 in 10 people born with female reproductive organs. Common symptoms include, but are not limited to, pelvic pain any time during the month, a wide range of GI symptoms, urinary symptoms, fatigue, debilitating periods and more depending on where the endometriosis lesions are located in the body.
Symptoms often start early in life, but due to cultural taboos, misinformation and a historical lack of emphasis in medical education, they may be ignored or misdiagnosed by caregivers, healthcare consumers and practitioners alike. The average diagnostic delay is 7-10 years.
Endometriosis symptoms may begin as early as when puberty starts. Endometriosis symptoms can present before menstruation, during menstruation, and/or after menstruation. An estimated 70% of teens with chronic pelvic pain go on to be later diagnosed with endometriosis.
Red flag: If you or your patient regularly feels pain during or around periods, and this pain is bad enough to interfere with usual activities, this is a red flag - it is not normal and should be investigated further as soon as possible. (If you do not have this, it doesn't mean that you don't have endometriosis).
Risk factors for endometriosis include a mother or sister having the disease (7x increased risk), early onset of menses, short or frequent menstrual cycles, Mullerian abnormalities, autoimmune conditions and more. However, many people develop endo who have none of these risk factors.
Hysterectomy is not a cure for endometriosis. A disease characterized by tissue found outside of the uterus is not cured by removal of the uterus, ovaries and/or tubes and cervix. Over 100,000 hysterectomies are performed each year in the United States for endometriosis and most of them are unnecessary. Neither is pregnancy a cure for endometriosis.
People with endometriosis need an individualized, multi-disciplinary treatment plan that may include specialized, incredibly difficult surgery. Most gynecologists are not trained in advanced endometriosis cases. Drug therapy may suppress symptoms, yet it does not eradicate endometriosis. Patients should be referred to an endometriosis specialist.
People with endometriosis have an increased risk of co-morbidities including allergies, asthma, and chemical sensitivities, autoimmune diseases such as multiple sclerosis and lupus, chronic fatigue syndrome and fibromyalgia, and certain cancers, such as ovarian and breast cancer.
Endometriosis often reduces quality of life and contributes to psychological distress. Unnecessary delays in diagnosis and gaslighting contribute to the negative mental health impacts of the disease. A holistic approach to care including mental health support can improve quality of life.
Many patients experience pain in their legs and hips among their endometriosis symptoms. A variety of factors contribute to this, and patients can experience leg pain due to one or several of these factors even if the problem is not in their leg or even directly on the nerves travelling to the leg.
One common way we see leg pain from endometriosis comes from something called “referred pain.” Referred pain occurs when the trigger for the pain is located in a different part of the body from where the patient actually experiences that pain. A variety of different things can cause referred pain, including irritation of nerves as they pass through the area where the trigger is located, muscle and nerve dysfunction related to the trigger of the pain, or what we consider to be a case of “mixed signals” which occurs when the body is experiencing pain in an area that, because pain isn’t typically generated in that place, the pain signal is interpreted by the body as being in a different location. A classic example of “referred pain” is when pain in the hip is actually being caused by a trigger located on the pelvic sidewall or sometimes in or on the ovary. This can be diagnostically challenging because not all hip pain is caused by something going on inside of the pelvis, but in some cases this is how the body will interpret pain in the ovary or pelvis.
Another potential source of leg pain comes from the fact that endometriosis can trigger severe pelvic floor dysfunction. When a high degree of tension is placed on the many muscles of the pelvic floor, this can put pressure on the nerves that travel through the pelvis to the leg. That degree of tension adds up over time and can cause a severe pain that often shoots down the back of the leg, often manifesting as what patients will describe as a sciatica-type pain. While endometriosis is the trigger for this pain, and therefore does need to be removed in order to gain long-term relief, physical therapy is often also an integral part of treatment for this type of pain because significant work is required to undo the long-term tension of the pelvic floor that was imposed over many years by endometriosis.
The least common but most challenging type of leg pain caused by endometriosis is when the endometriosis directly invades the major nerves that travel to the leg through the pelvis. This can happen with any of the major nerves including the sciatic nerve, the pudendal nerve and the obturator nerve. The sciatic nerve is the most commonly discussed of these because of its hallmark, which is severe radiating posterior leg pain that is unrelenting and unresponsive to medications or physical therapy. The good news is that this type of endometriosis can generally be seen on imaging due to its invasive nature, and therefore an expert team can make preparations to address and manage this very complex, though rare, manifestation of endometriosis. (This blog post was written by Washington Endometriosis & Complex Surgery, Washington DC)
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