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There are many myths around endometriosis, often in lieu of robust research into the disease. It’s estimated that around 10% of the global female population has endometrosis, but this is based on diagnosis and the figure is likely to be higher given that it can take, on average, ten years for a woman to be given a diagnosis of proven (and staged) endometriosis.
Unfortunately, this knowledge gap has also led to a lot of misinformation about the disease and how it affects women’s whole bodies. Fortunately, with a rise in awareness of Endometriosis over the last 5 years, there is hopeful research starting to emerge that is offering a better insight into the condition, how it manifests as a whole body disease and diagnostic pathways are finally improving. Endometriosis remains, for the time being, an incurable disease, but symptoms can be managed with the correct support, treatment and surgery to improve the lives of those suffering with it.
Let’s bust some of the myths around endometriosis:
MYTH: Ultrasounds can diagnose endometriosis
Truth: Scanning or ultrasound is often the first step in the diagnositic pathway for women who have symptoms of endometriosis, but it rarely provides a definitive diagnosis on its own. Endometriosis lesions can be small and may not show up on standard ultrasounds. A transvaginal ultrasound performed by a highly trained specialist may detect some cases, but it remains a specialism for sonographers as part of advanced training. Large mass and lumps of endometriosis may be visible on a transvaginal ultrasound and it has shown benefit in diagnosing ovarian endometriosis, but smaller lesions are indetectable during either a topical or transvaginal ultrasound as they have no real mass, only color. These lesions often appear as ‘blood splatters’ that implant on various areas of the pelvis and organs such as bladder and bowel.
A laparoscopy is the gold standard for diagnosis. According to the American College of Obstetricians and Gynecologists (ACOG), laparoscopy is the most accurate way to diagnose endometriosis.
MYTH: All periods are painful
Truth: First things first: Periods SHOULDN’T be very painful. Yes, for some women cramping is uncomfortable, but if your cramps and pain during your period are beyond a discomfort, then this is a sign that something isn’t right. One of those things is endometriosis – although it’s important to note that not every woman with the disease will experience painful periods as a symptom. If your period is making you feel faint or nauseous as a result of pain, you are finding your lifestyle or work is restricted, or you are unable to do normal day to day activities, then you need further investigation to find out the cause – and your pain shouldn’t be dismissed as ‘normal’. Often, painful periods can be managed or treated with hormonal treatment. In most cases, this will be the ‘pill’, which other than birth control can offer hormonal therapy to moderate hormones and even stop your periods altogether.
Fun fact: it’s not necessary for women to bleed every month. If your period is painful and you want to stop them altogether using hormone therapy, that is a valid option to consider and discuss with your treatment provider. The idea of needing a week ‘off’ birth control originated back in the 1950s, and was an agreement with the Vatican who were concerned that the pill interfered with God’s will for procreation. The agreement was made that the seven day window would be established as an extension of the menstrual cycle (rather than the withdrawal bleed from the pill that actually takes place). Of course, in this seven day window, women are at a much higher risk of pregnancy. Despite misinformation passed down the generations, there is no evidence that suppressing menstruation has any impact on fertility or women’s overall health.
MYTH: Endometriosis just affects the uterus
Truth: Endometriosis is not limited to the uterus or even the pelvic area, although this is where it is most commonly found, especially in mild cases. Endometriosis occurs when tissue similar – it’s not exactly the same! – to the lining of the uterus, endometrium, grows outside the uterus. The most common areas are on the ovaries, fallopian tubes, and the lining of the pelvic cavity.
However, in cases of deep penetrating endometriosis (often referred to as Stage III and IV), endometriosis is found on organs such as a the bladder, bowel, appendix and rectum. While it often involves the reproductive system, it’s not solely a uterus disorder.
MYTH: Endometriosis is only found in the pelvis
Truth: Endometriosis can extend beyond the pelvis, especially in advanced cases of the disease. What many people don’t realise is that endometriosis can affect the entire body; it’s been found in lungs, liver, diaphragm and even the brain. While in milder cases it is most often confined to the pelvic area, it’s important that where endometriosis is diagnosed that the whole body is taken into consideration when considering the severity of the disease on an individual basis. Saying that, endometriosis in the brain has only been reported three times to date in scientific literature, so while possible, it’s important to acknowledge that cerebral endometriosis is exceptionally rare.
While pelvic involvement is most common, it’s essential to recognize that endometriosis can affect various parts of the body, leading to diverse symptoms. Source: Journal of Clinical Medicine
MYTH: Bowel endometriosis can be managed by eating better
Truth: While a healthy diet can positively impact overall well-being and is important in our whole body approach to managing endometriosis, it is not a standalone treatment and your symptoms shouldn’t be dismissed as being easily managed by diet alone. This condition involves the abnormal growth of tissue, and unfortunately its impossible to reverse or cure it via diet or supplementation. Managing endometriosis typically requires a multi-faceted approach, including medication, surgery, and lifestyle modifications, which can be further supported with better dietary choices.
The symptoms of bowel endometriosis can be somewhat eased through diet and supplementation however. Foods that regulate estrogen production can be beneficial for managing flare ups in this area of the body especially, with evidence showing that by reducing caffeine, trans fats, red meat consumption and increasing omega-3 dense foods, and cruciferous vegetables that women can expect some relief from their symptoms. There is an increasingly strong link between gut health and endometriosis too due to it’s influence in inflammation in the body.
MYTH: You can’t have endometriosis after menopause
Truth: This myth is regularly touted by clinicians, despite increasing evidence to the contrary. Unfortunately, despite the glimmer of hope that an ‘end is in sight’, Endometriosis does not necessarily disappear after menopause. For some women, symptoms may improve and subdue due to hormonal changes post menopause, and as our hormones change. The thought that endometriosis is a disease only affecting reproductive years has prevailed since the 1940s to today, but around 2-5% of endometriosis cases reported in science are in post-menopausal women, and in a few cases, endometriosis was discovered post menopause with no prior history shown via imaging (ie MRI/ Ultrasound) or surgery.
While the symptoms may improve or subside for some individuals due to hormonal changes, endometriosis is estrogen-dependent. It can persist if small amounts of estrogen are still produced by the body, such as from adipose tissue. Therefore, it’s possible for endometriosis to persist after menopause and cause persistent symptoms.
MYTH: Endometriosis always causes infertility
Truth: Without a doubt, endometriosis can affect fertility for many women – especially if lesions are found on the ovaries or endometrium. However, not all women will experience fertility issues, and many will still conceive naturally or with assistance from fertility treatments, like IVF. Early diagnosis and appropriate treatment can help manage symptoms and improve fertility outcomes for those who wish to have children.
Statistically speaking, between 30-50% of women who have endometriosis will experience infertility. To put this figure into context, the normal chance of getting pregnant each month for women without endometriosis is approximately 10-20%, while those with proven endometriosis have a chance of 1-10%. Aside from the difficulty that endometriosis lesions present, egg quality is often affected in those with mild to severe endometriosis and with scarring present.
If you are trying to conceive and suspect that you have symptoms related to endometriosis, it’s important to speak to your doctor early.
MYTH: Pregnancy cures endometriosis
Truth: This is possibly one of the worst myths perpetuated frequently by clinicians. It creates an awful dilemma for women who may not be ready for children, or have undiagnosed fertility issues, and often can put pressure on relationships as women search for a resolution to persistent pain caused by endometriosis.
Evidence shows that pregnancy can temporarily alleviate endometriosis symptoms for some women. This is because, during pregnancy, progesterone levels increase to support the pregnancy and estrogen levels lower – as we know, because our periods stop during pregnancy. Ovarian endometriomas, in particular, positively reduce during pregnancy. However, this is a temporary state and endometriosis most often returns after childbirth and in some cases, endometriosis has interfered with possibility of a successful pregnancy to term.
As a result, pregnancy should never be considered as a ‘treatment strategy’ for endometriosis and it is negligent of a healthcare provider to recommend this as a treatment pathway for endometriosis. What we can take from this concept though is that progestins, the synthetic form of progesterone, can improve symptoms and help to manage endometriosis effectively. This is a good treatment option to discuss with your healthcare provider.
MYTH: You can’t suffer with endo after hysterectomy
Truth: Hysterectomy is often often as a recommendation for the treatment of endometriosis, after other treatment options have been exhausted. This major surgery either removes just the uterus (referred to as a subtotal hysterectomy) or the ovaries too (total hysterectomy). The cervix may also be removed in a total hysterectomy too. In cases where just the uterus is removed, there is a high incidence of recurrence of endometriosis – but even when the ovaries are removed, lesions that are left can continue to grow, progress and cause symptoms.
Despite it being offered often the ‘ultimate’ treatment option for endometriosis, it is not a cure. Endometriosis can affect areas outside the uterus, and unless all endometriotic tissue is removed during surgery (including lesions on other organs), symptoms will continue to persist in most cases. Moreover, it’s essential to weigh the potential risks and benefits of a hysterectomy carefully, especially for those who do not wish to lose fertility.
MYTH: Adenomyosis and Endometriosis Are the Same Thing
Truth: Adenomyosis and endometriosis are two distinct conditions, although they share some similarities. Endometriosis involves the growth of endometrial-like tissue outside the uterus, commonly in the pelvic region. Adenomyosis, on the other hand, occurs when endometrial tissue grows into the muscular wall of the uterus itself. While both conditions can cause pain and other symptoms, they have different diagnostic criteria and may require different treatment approaches.
Accurate diagnosis by a healthcare provider is crucial to determine whether an individual has endometriosis, adenomyosis, or both and this should, in most cases, be done by laparoscopy.
Unfortunately, there is still a need for further research and funding into Endometriosis for science to understand why it occurs. As one of the most prevalent diseases in women, robust information is important to help us to navigate options for treatment and management of the condition and to advocate for the best pathway for ourselves, individually. For more information on endometriosis, check out our blog.
Kate is a content writer, community creator, and ‘Endo-Warrior’ with Stage IV Endometriosis. She’s mum to three kids, two dogs and unsurprisingly; a lover of wine. Kate lives with her family in Hastings, UK.