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Adenomyosis: 5 things you need to know about the ‘evil twin sister’ of endometriosis
Despite increasing public awareness of endometriosis, with celebrity figureheads including Lena Dunham and Molly Mae, the condition’s ‘evil twin sister’, adenomyosis, remains neglected. While the NHS has an entire webpage which explains what endometriosis is, there is currently no equivalent for its sister condition. Read on for five things you should know. It’s not the same as endometriosis Both endometriosis and adenomyosis occur when the lining of the uterus (known as the endometrium) grows out of place, but there are major differences between the two. In endometriosis, the rogue tissue invades areas outside of the uterus. While the extent of the growth varies from patient to patient, it can affect areas such as the bladder, bowel, ovaries, and even the lungs. Adenomyosis, on the other hand, causes the rogue tissue to bury inside the muscular wall of the uterus. It’s possible to suffer from both conditions at the same time. Symptoms include bloating, heavy periods, and pelvic pain Thanks to the invasive endometrial growth, adenomyosis is characterised by an enlarged uterus. During menstruation, the embedded tissue swells and bleeds, typically causing a variety of symptoms (although some women are asymptomatic). According to a patient leaflet published by University College Hospital, sufferers commonly have painful and irregular periods, with more than half experiencing heavy bleeding. Chronic pre-menstrual pain, and feelings of heaviness and discomfort in the pelvis are among other possible symptoms. Less frequently, adenomyosis can cause bloating, pain during intercourse, and pain related to bowel movements. All symptoms should stop after the menopause. It affects 1 in 10 women The condition is believed to affect 10 per cent of women in the UK. That makes it just as prevalent as endometriosis, although it’s more common in women between the ages of 40-50, and those who have been pregnant before. While the cause of the condition is not known, UCH says that “genetics and some hormones may play a role”. In terms of long-term effects, the North Bristol NHS trust says that adenomyosis does not appear to decrease the chance of pregnancy, however it has been linked to an increased risk of miscarriage and premature birth. Treatment options are limited For women with mild symptoms, trying to get pregnant, or nearing menopause, the North Bristol trust says that treatment may not be necessary, but for those seeking relief from symptoms, it recommends medication to reduce pain and bleeding, and hormonal interventions such as the contraceptive pill. The only “cure” is a surgical procedure involving the removal of the womb (hysterectomy), although this is a last resort intervention. The Bristol-based trust also offers an alternative surgery which involves blocking the blood supply to the endometrial growth, forcing it to shrink, but neither procedure is advisable for women who want to get pregnant in the future. It can take years to diagnose The condition is typically diagnosed using MRI and ultrasound scans, but the NHS says that adenomyosis can take “a long time, even years, to diagnose” because “symptoms and severity can vary between women”. The frequent dismissal of women’s gynaecological symptoms means that signs of adenomyosis may be conflated with ‘normal’ menstruation, or even other conditions such as endometriosis. Anecdotal reports of sufferers suggest that misdiagnosis is common. Gabrielle Union, one of the only celebrities to have publicly identified as having the condition, suspects her condition went undiagnosed for years. Speaking at a conference in 2019, Union explained: “The gag is I had [adenomyosis] in my early twenties, and instead of someone diagnosing me they were like ‘Oh you have periods that last nine or 10 days and you’re bleeding through overnight pads? Not a mere inconvenience... perhaps there’s something more there.’” Earlier this year, the charity Tommy’s reported that the condition might be “underdiagnosed” after a review of existing studies found that “mild” cases could be missed by clinicians using current diagnostic methods. “There should be training for clinicians and sonographers to diagnose adenomyosis using a standardised criteria,” said Dr Ishita Mishra, leader of the review. “Being able to identify this condition using a uniform set of criteria would then help give us a true picture of the numbers affected, and better understanding of the impact of this condition,” Mishra explained. If you have any health concerns, you should always contact your GP in the first instance. There is also information available via NHS Scotland or Endometriosis UK. Read More Lena Dunham marks five years of sobriety: ‘Happiest of my time on earth’ ‘Some days things just do not work’: What happens when your smear test doesn’t go smoothly? Woman’s warning after terminal cancer mistaken for heavy periods 5 things you need to know about adenomyosis, the ‘evil twin sister’ of endometriosis Woman’s warning after lip filler left her unable to close mouth ‘Suddenly, I saw Dad again’: The radical tech helping those living with dementia
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From strokes to heart attacks: Doctor highlights most commonly misdiagnosed health conditions in women
It’s no secret that women are more likely than men to be misdiagnosed by a medical professional. In fact, as many as 57 per cent of women have reported being wrongly diagnosed by a doctor. In 2016, a study found that women have a 50 per cent higher chance than men of receiving a misdiagnosis after a heart attack, while researchers found in 2014 that 33 per cent of women are more likely than men to be misdiagnosed after a stroke. When it comes to women’s health, an explicit gender bias in medicine can lead to serious and sometimes life-threatening results. That’s why Dr Erin Nance, an orthopaedic hand and wrist surgeon located in New York City, has dedicated the month of October to sharing the most commonly misdiagnosed health conditions that affect women. Her series has since gone viral on TikTok, as she discussed how symptoms of rare autoimmune disorders or infertility can present differently in women, leading to a misdiagnosis. For the first video of the series, Dr Nance revealed how postural orthostatic tachycardia syndrome - also known as POTS - affects more than one million people, but is present in mostly women aged 20 to 50. However, Dr Nance explained that POTS is so difficult to diagnose because “we can’t see it”. “This is the group of women that get written off by doctors because they look healthy. There doesn’t seem to be anything wrong with them,” she said. According to the National Institute of Neurological Disorders and Stroke, POTS is a condition in which a reduced volume of blood returns to the heart after someone stands up from a lying down position. As a result, patients with POTS may experience an increased heart rate, dizziness, or fatigue when they stand up after lying down. @littlemissdiagnosed Day 1: It’s me, POTS, I’m the the problem it’s me #littlemissdiagnosed #31for31lmd #pots ♬ original sound - Dr. Erin Nance ?? Dr Nance explained that some other symptoms of POTS include “chronic fatigue, brain fog, total body chronic pain, GI [gastrointestinal] stomach issues, anxiety, headaches, and it can affect any part of your body”. Another difficulty about POTS is that there’s “no specific treatment” to help the condition, Dr Nance said. “We can’t do a biopsy, we can’t do any imaging, there’s no blood test for it,” she added. Instead, doctors may recommend drinking more fluid, exercising regularly, or wearing compression stockings to keep blood flow in the centre of the body. For the 14th day of her video series, Dr Nance received 1.4m views when she spoke about the commonly misdiagnosed symptoms of stroke in women. “Stroke is the third leading cause of death in women,” she began the clip. “Yet, women are over 33 per cent more likely to be misdiagnosed when having an acute stroke.” Dr Nance admitted that most women who experience a stroke are often told by doctors that they simply have anxiety or a migraine. When it comes to the “unique” symptoms of stroke that are present in women, some may experience loss of consciousness or fainting; general weakness; shortness of breath; confusion, unresponsiveness, or disorientation; sudden behavioural change; agitation; hallucination; nausea or vomiting; seizures or even just hiccups. @littlemissdiagnosed Day 14: Stroke is no joke #littlemissdiagnosed #31for31lmd #stroke ♬ original sound - Dr. Erin Nance ?? “These unique symptoms are often the ones that are overlooked,” Dr Nance said, before detailing the individual risk factors that can put women at a greater chance of having a stroke. The first on the list of risk factors was taking birth control pills, followed by pregnancy, hormone replacement therapy, and history of suffering from migraines. “The reason why this is so important for everyone - every normal, everyday person - to know this is because the best outcomes are when women are evaluated and treated within three hours of having this symptom,” Dr Nance added. On day 16, the orthopedic surgeon explained how symptoms of a heart attack can also be wrongfully overlooked by doctors. “More women than men die of heart disease every year, yet women have a 59 per cent increased risk of being misdiagnosed with acid reflux, stress, or anxiety,” Dr Nance said. Besides chest pain, a woman may exhibit signs of a heart attack when she experiences unusual fatigue for several days; sleep disturbances; shortness of breath; lightheadedness; nausea or cold sweats; indigestion or gas-like pain; and pain in the arm, neck, jaw, or back. @littlemissdiagnosed Day 16: It’s not always Big on the Peloton #littlemissdiagnosed #31for31lmd #heartattack #womensheart ♬ original sound - Dr. Erin Nance ?? When it comes to multiple sclerosis (MS), Dr Nance revealed on day 19 of her video series that women are 83 per cent more likely to be misdiagnosed for MS by a doctor. MS is a disease that affects the “myelin” - the protective sheath covering the brain, nerves, and the spinal cord. According to Dr Nance, some of the often-missed signs of MS include extreme fatigue, confusion, forgetfulness, and mood swings. @littlemissdiagnosed Day 19: You’re gonna be okay #littlemissdiagnosed #31for31lmd #ms #multiplesclerosis ♬ original sound - Dr. Erin Nance ?? As for lupus - an autoimmune disease in which the immune system attacks its own tissues, causing inflammation in the body - Dr Nance shared in the 20th video of her series that women between the ages of 15 and 45 are most likely to develop the disorder. “The average time from when you first develop your symptoms to diagnosis is six years,” Dr Nance revealed. @littlemissdiagnosed Day 20: Sneaky little ? #littlemissdiagnosed #31for31lmd #lupus ♬ original sound - Dr. Erin Nance ?? She claimed that 46 per cent of patients report being misdiagnosed with something other than lupus, while “54 per cent of them were told that either nothing was wrong with them or that their symptoms were psychological.” “The main problem with lupus is that the longer you go undiagnosed and untreated, then the greater risk for end organ damages,” she added. The Independent has contacted Dr Nance for comment. 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