The Impact of Endometriosis
Endometriosis is a chronic disease with no cure, so obviously it can have a huge impact on women’s lives. 1 in 10 women worldwide suffer from endometriosis. And it doesn’t discriminate, affecting women from third world countries with no access to healthcare, to celebrities like Mandy Moore, Alexia Chung, Amy Shummer, and Susan Sarandon who are starting to share their stories across the media.
Within the UK, there are more than 1 million cases of endometriosis each year, and Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.
While those headline numbers show the wider societal impact of the disease, they don’t speak to the physical, mental and emotional impact Endometriosis can have on a woman's life.
If we look at the symptoms of endometriosis again, it’s pretty clear that this disease can do a number on your body. When it flairs some women find themselves completely knocked flat for seven days or more. This can be a mixture of pain, chronic fatigue, brain fog, migraines, vomiting, painful bowl movements, pain during sex and extreme bleeding. All of these things on their own would be enough to drive most women to their duvets. But the combination of all of the above and experiencing it every month can be debilitating.
It is important to make sure that you give yourself permission to be ill. Women with Endometriosis are not just suffering a “rather bad period”. You have rogue cells filling up with blood across your body, causing you severe pain. If people understood this more, they might better understand just how serious this illness is.
As it is a chronic illness, the most important thing you can do is to find ways to cope. Work with your doctor, your family, your employer (or school) and others around you to support you and help you manage this condition. Even if they don’t have a solution, giving them a path to empathy for your condition should help.
Some women with endometriosis manage to get pregnant without any issues whereas for others it is not so straight forward. Endometriosis can impact your ability to conceive / to become pregnant or to stay pregnant if the endometrial deposits / patches are in or near to the ovaries or fallopian tubes. Some women only get their diagnosis of endometriosis when they have investigations for problems with fertility.
The good news is that if this is the cause of fertility issues for you then in most cases this is treatable and you will be able to have surgical / hormonal treatments or IVF to help you to become pregnant.
If you have a diagnosis of endometriosis and would like to try for a family at some point in the future it is important to discuss with your doctor as early as possible how best to manage your endometriosis to optimise your chances. When your periods are managed through hormonal methods such as the progesterone (eg Mirena) IUS / coil, the endometriosis growth, inflammation and scarring are much less if not halted altogether. This treatment can then be stopped when the time is right for you to try to conceive and you are less likely to have problems at this point.
The good news is that during pregnancy and afterwards if breastfeeding, your symptoms of endometriosis are in most cases stopped / paused.
Mental Health Impact
Simply living with ongoing chronic pain is hard enough. The toll constant pain takes on the body and mental health is incredible. It is common and understandable for people living with endometriosis to feel low in mood, even to get depression, especially if they had felt like things were getting better and then the symptoms worsened again.
People with endometriosis also often feel that they are missing out on their lives. They spend days, if not weeks, in agonising pain, missing out on work, education, and social activities that they enjoy. They may feel they are letting others down or feel they are risking losing their jobs. All because their body won’t let them.
As mentioned briefly above, endometriosis can impact fertility, too, depending on where the tissue forms. It is one of the most common causes of infertility in women, and considering how much emphasis society places on women’s ability to produce babies, this can make women feel a range of feelings from annoyance to complete devastation.
And that is just the direct impact of endometriosis. So many times, women get dismissed or pushed aside. So on top of all the feelings they are having, they may also feel like no one believes them. They may think others believe they are making it up or exaggerating. And if they hear that everything is normal often enough, they may even believe that themselves. The loneliness of not being believed or not believing your own truth can have very serious impacts on self esteem and mental health.
If you have endometriosis and you are feeling any of the things we’ve listed above (or things we haven’t mentioned) it is important for you to get help. Managing this condition isn’t just about trying to reduce physical pain, it is about helping to support you with mental and emotional pain too.
There are a number of charities and communities available to support women in the UK who are going through this journey. You do not need to suffer alone. Get support | Endometriosis UK (endometriosis-uk.org)
CRITICAL: If you are feeling depressed due to a diagnosis or lack of diagnosis, please seek help from your GP, a mental health professional or support group.