In recent years the conversation surrounding endometriosis has increased, with campaigners and medical experts pushing for greater awareness of the condition that affects so many. It's taken a long time for the condition to be acknowledged medically and there's still a long way to go in tackling the unconscious bias that causes continued misdiagnoses of the condition and delays to treatment.
Endometriosis affects roughly 2 million women and people with uteruses, as well as many others who have to struggle undiagnosed thanks to the fact that sufferers often have to fight for their symptoms to be taken seriously by medical professionals. But as more and more people begin to talk about endometriosis and the difficult consequences the condition has on their physical and mental health, more resources and information become available. However, as is often the case, along with genuine advice can come misconceptions and conjecture, which can be damaging to those seeking help.
Here are the most common misconceptions surrounding endometriosis, debunked by medical professionals.
1. If you have endometriosis you'll automatically have trouble getting pregnant
One of the many concerns people have when they receive a diagnosis of endometriosis is surrounding their fertility, and the worry that the condition might make it difficult or impossible to have children. But according to Professor Andrew Horne, a gynaecological specialist at the MRC Centre for Reproductive Health in Edinburgh and Co-Director of EXPPECT endometriosis research team, that isn't something to assume.
"Having endometriosis is bad enough in itself because of the chronic pain it causes, without then worrying about your fertility. In reality, around two thirds of women who have the condition have no problem getting pregnant," Professor Horne says. "And if you do have problems getting pregnant, often people respond well to IVF treatments or reproductive technologies, although of course, that's still not an easy thing to go through."
2. You can only get endometriosis past age 30
Anecdotally we know that many young women who present to their doctor with symptoms of endometriosis in their teens are often sent away, and told that their bodies are 'adjusting' or that that simply what periods feel like, thanks to the fallacy that pain is an inherent part of having female reproductive organs. But according to Dr. Natasha Danilyants, co-founder of The Center for Innovative GYN Care, endometriosis usually does begin around a younger age.
"Typically, endometriosis starts in the early years. I hear from many patients in their teens and 20s who have been told that they’re too young to have endometriosis, and that's just not true. There can be a long delay in diagnosis for endometriosis, which can build frustration and mistrust toward medical providers who have dismissed their patients' symptoms because of their young age. The risks of doing a laparoscopy are so low compared to the benefits of diagnosing endometriosis earlier and giving patients the treatment they need to live a higher quality of life."
3. Endometriosis can be cured with alternative treatments
The internet is full of alternative therapies which claim to cure endometriosis, from herbal supplements to detox pearls, but according to Dr Danilyants you should always be suspicious of anything claiming to cure endometriosis, since there is currently no cure.
"Certain alternative treatments - like acupuncture, physical therapy and nutritional counselling - might help to relieve symptoms, but there is no scientific evidence to back-up the effectiveness of herbal supplements, vaginal steams or detox pearls.
"It's important to separate treatments that are only addressing the symptoms versus methods that are actually treating the endometriosis. Minimally invasive excision surgery is going to treat the disease by fully removing the lesions but endometriosis can recur even after being removed, so a treatment plan can help to manage residual pain."
4. Endometriosis is a rare condition
Because many sufferers often found their symptoms were dismissed by medical professionals, the belief was allowed to proliferate that those with a diagnosis were a small group with a rare condition. But, in actual fact endometriosis affects as many people as diabetes, with likely many more yet to be diagnosed.
"Endometriosis isn't a rare condition, it's a hidden condition," says Professor Horne. "Not long ago I was having a conversation with a university researcher who referred to it as 'a rare condition' but also said 'it affects one in 10 women'. So, the fact is that it's not rare, people need to understand that it's common. And that because of that, also, we need a lot more money invested in it - both at the clinical level as well as the research."
5. A hysterectomy guarantees relief from endometriosis-related symptoms
For many people a hysterectomy can seem like the only way to alleviate all your symptoms, but Professor Horne always urges people to consider all your options before committing to the procedure.
"A hysterectomy doesn't guarantee relief from endometriosis-related symptoms and can neither be classified as a 'treatment', nor as a 'cure' for endometriosis. Consider what endometriosis is: a disease where tissue similar to the lining of the uterus (known as the endometrium) is found outside of the uterus. This often means that the uterus itself is a normal and healthy organ and, in fact, removing that normal and healthy organ may have little impact on your pain if other causes for your symptoms are not addressed at the same time.
"For people with endometriosis who have severe period pain or heavy menstrual bleeding, a hysterectomy may offer improvement or resolution of these symptoms, but it must be balanced with the invasiveness and permanence of the procedure and with the acknowledgment that some women with endometriosis see no change in their pain symptoms after a hysterectomy."
For support and information about endometriosis visit Endometriosis UK or call their helpline on 0808 808 2227.
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