This Endometriosis Awareness Month, fertility experts are raising awareness of the symptoms of the condition in a bid to help women who are suffering reach a timely diagnosis.
Endometriosis is when tissue similar to the lining of the womb grows in other places, like the ovaries and fallopian tubes, according to the NHS. While it's a long-term condition that can impact on your life, finding out you have it sooner rather than later will enable you to promptly get the right treatment available.
"The average time between symptom onset and diagnosis for endometriosis is ten years. This is staggering," says fertility expert Jenny Saft.
"To shorten this delay, we need to debunk the myths and misconceptions that surround endometriosis, menstruation and period pain. This is the only way to empower women to seek help when they need it – and ensure medical professionals are equipped to recognise endometriosis symptoms and reach a timely diagnosis."
Here, Saft and Sandy Christiansen, an embryologist and fertility coach, bust four common myths about endometriosis, something one in 10 British women and those assigned female at birth will experience, and the second most common gynaecological condition in the UK.
1. The pelvic pain caused by endometriosis is similar to period pain
The pain caused by endometriosis is often worse than what might be considered a 'normal' painful period.
"Different people will experience different endometriosis symptoms and varying levels of pain. Some women will have painful and heavy periods, others might experience severe pelvic pain in the lower tummy or back, which worsens during their period," says Christiansen, of Bėa Fertility.
"It’s important to emphasise that the pelvic and period pain many women experience when they have endometriosis is severe, and tends to be worse than what you would expect to experience during a normal menstrual cycle.
"It’s crucial we’re clear about this, as research from Endometriosis UK found that 62% of women would put off going to a doctor with endometriosis symptoms because they don’t think it’s 'serious enough', or they think their painful periods are 'normal'."
More unusual or extreme symptoms shouldn't be disregarded.
"Although period pain is normal, the chronic pain associated with endometriosis is not – and should be taken seriously. If your period pain is interfering with your day-to-day life, please seek help. Even if you have mild endometriosis, it’s important that you see a doctor so that your symptoms can be investigated, treated and managed appropriately," urges Christiansen.
"It’s also important to note that heavy and/or painful periods and pelvic pain aren’t the only symptoms of endometriosis. Pain can also show up in other areas of the body, and you could experience pain when you go to the toilet or during sex, which we should be aware of, too."
2. Endometriosis means you won’t be able to get pregnant
While this might be true for some, it's certainly not for everyone.
"One of the main complications associated with endometriosis is difficulty getting pregnant, or not being able to at all. Whilst endometriosis is associated with fertility problems, natural conception is still possible, even for women with severe endometriosis," Saft, CEO and co-founder at fertility platform Apryl, points out.
"If you receive a diagnosis and are still hoping to start a family, don’t be disheartened. It’s estimated that 60-70% of women with endometriosis can get pregnant naturally."
And for those who are struggling to conceive naturally, there are options. "These include undergoing surgery to remove patches of endometriosis tissue, or trying a fertility treatment such as IVF. Your doctor will be able to advise on the best next steps," says Saft.
"Seeking an early diagnosis for endometriosis is important if you are experiencing symptoms and are trying to conceive. It will enable you to explore your options with a health professional to give you the best chance of having a safe and healthy pregnancy.”
3. Endometriosis only affects older women
The condition can affect women of any age.
"It’s a common assumption that endometriosis only affects older women. But research indicates that up to two thirds of women with it experience symptoms before they’re twenty years old," says Saft.
"Research also suggests that the earlier symptoms start, the more severe the disease is in adulthood. It’s therefore critical to increase knowledge and awareness of adolescent endometriosis to drive earlier diagnosis, treatment and management."
Saft adds, "If you are a teenager (or the parent of a teenager) experiencing menstrual pain to the extent that it keeps you away from school or prevents you from participating in day-to-day activities, then it’s important to discuss your symptoms with a doctor."
4. Getting pregnant can cure endometriosis
Make sure you always get your health information from reliable sources.
"Some online sources suggest that getting pregnant can alleviate endometriosis symptoms. But the development of endometriosis is variable, and academic research suggests there is no evidence that pregnancy can reduce the size or quantity of endometriosis tissue," explains Christiansen.
“Whilst some women have reported that their endometriosis symptoms were temporarily alleviated during pregnancy (when their periods stopped), it is a misconception to suggest that getting pregnant is in any way a 'cure'.
"This association can be dangerous, as studies also show that women with endometriosis can be at a higher risk of experiencing complications during pregnancy, such as pre-term birth, miscarriage or caesarean delivery. However, not all women with endometriosis will experience complications during pregnancy. Doctors will monitor pregnancy closely to keep both mother and baby safe."
Read more: Can your period really get 'stuck'?
Watch: Endometriosis: Women in severe pain put off GP visits because of 'medical gaslighting' and thinking pain is normal
Symptoms and treatment
Endometriosis symptoms might include pain in your lower tummy or back, period pain that stops you doing normal activities, heavy periods, pain during or after sex, pain when peeing or pooing during your period, feeling sick, constipation, diarrhoea, or blood in your pee or poo during your period, and difficulty getting pregnant.
For more information visit the NHS website page on endometriosis, like what treatments are available, which include painkillers, hormone medicines and contraceptives, surgery to cut away patches of endometriosis tissue, and surgery to remove part or all of the organs affected. Sometimes your doctor might suggest seeing if your symptoms improve on their own first.
For information on how to get support, visit Endometriosis UK.