176 million people worldwide have endometriosis. Despite its prevalence, many people don’t know what it is. It's not talked about, it's under-researched, and it's persistently underfunded. For Endometriosis Awareness Month, Bustle UK is hearing from people living with the condition and doctors who specialise in it, and is opening up the conversation to help you get the treatment you deserve.
Unfortunately there are many
myths and misconceptions about endometriosis. There's currently very little education in schools about the condition, and the fact that it can be quite complex to diagnose and treat doesn't help. But correct information can be life-changing for those living with the condition. Thinking you may have an illness and not knowing where to turn to for the right support or information is a frightening and lonely experience.
According to endometriosis.org, a global forum for news and information about the illness, around
176 million people and their families will be affected by endometriosis worldwide. So It's about time we start dispelling some myths. I spoke to Lone Hummelshoj, chief executive of the World Endometriosis Society to find out the facts.
According to Endometriosis UK, endometriosis is a condition where cells similar to the ones that make up the lining of your womb
are found in other places in the body. This means they build up, shed, and bleed just as the lining of your womb does every month. However, the blood has no way to escape your body. This can lead to painful and heavy periods, fatigue, pain during sex, and other symptoms.
can seriously take its toll on people’s mental and physical wellbeing, so access to clear and correct information is vital. However, just as consulting doctor Google is almost always a bad idea, there are a lot of myths, misconceptions, and mixed messages surrounding endometriosis. Here's what you need to know.
Debilitating Period Pain Isn't Normal
I asked Hummelshoj why she thinks there is so much taboo around endometriosis. She explains that many people just don't know what level of period pain is normal. “I think society as a whole is very poor at acknowledging pain and we are not good at talking about what is normal and what isn’t when it comes to a [person's] period," she tells me. “Too many assume that pain with your period is normal, and that it is part of [menstruating] but that is absolutely not the case. If period pain interferes with school, work, and social activities, then it is not normal."
Endometriosis Pain Isn't The Same As Period Pain
According to endometriosis.org, to understand why the pain experienced by those with
endometriosis is often dismissed as just period pain you have to go all the way back to the 19th century. It states, “‘women’s problems’ perplexed nineteenth century doctors, who saw them as indicative of unstable and delicate psychological constitutions. Even though attitudes [...] have improved during the twentieth century, some of the old beliefs still linger unconsciously, and affect the medical profession’s attitudes towards complaints including period pain.”
Teenagers Can Suffer From Endometriosis
It has also been pointed out that while some medical professionals think it is rare for teenagers to suffer with endometriosis
there is no such thing as being too young. Endometriosis UK makes it clear that endometriosis can affect anyone "regardless of race or ethnicity.”
There Is No Cure For Endometriosis
Raymond Forbes LLC / Stocksy
There are also a lot of assumptions attached to treatments for endometriosis. According to endometriosis.org, some people believe that
hormonal treatments, such as the pill or progestins can be used to cure endometriosis. While hormonal medication may keep the symptoms at bay for a while they aren’t a long term cure. Hummelshoj argues that the best thing you can do is seek medical advice and trust your own body. She says, “there are so many blogs out there it is difficult to control whether it is the correct information that is being passed out or whether there are vested interests, dare I say it.” She adds, “Somebody who can only hand out prescriptions because they are not qualified to perform surgery may claim drugs can cure endometriosis. Conversely, surgeons, who may make a lot of money through private practice, may say surgery is the only way to cure endometriosis — and neither is true.”
Pregnancy and hysterectomy are also sometimes presented as cures for for endometriosis, but pregnancy will
only suppress symptoms for a time and, as hysterectomy removes the uterus and endometriosis occurs outside of it, the condition can persist after the procedure.
Endometriosis Doesn't Necessarily Cause Infertility
Vera Lair / Endometriosis
No two people experience endometriosis in the same way, but that shouldn't stand in the way of clear and accurate information. As far as the future is concerned, Hummelshoj explains there is much more research to be done.
She says, “the management of endometriosis depends very much on the individual, [their] symptoms, where [they] are in her life, [their] access to treatment, and [their] type of endometriosis. Discovering the different types of endometriosis is where we still need to do a tremendous amount of research to understand better those types of endometriosis that respond differently to different types of treatment." So here's to a future where endometriosis is much better understood.