Introduction
Endometriosis often means you experience severe pain which, when managing daily, can feel draining. It is understandable if your mental health is affected as a result. At Smile, we recognise that you may need some support to manage your physical and mental health when you get a difficult diagnosis.
You feel nauseous. Pains in your lower back and stomach leave you doubled over. Your periods make it feel even worse. You feel anxious as the discomfort you are experiencing never seems to relent. Endometriosis UK estimates that 1.5 million women in the UK are familiar with these symptoms, with 176 million women globally experiencing similar feelings.
Endometriosis is relatively misunderstood by lots of people. This may be because at most, it will affect half of the population and therefore isn’t taken as seriously as conditions that could affect everyone. Those who have endometriosis, or know someone who does, are aware that it can be incredibly painful and has a huge impact on that person’s life. The physicality of the condition can be stressful to manage and this can then impact your mental health.
How endometriosis affects your mental health
If you are experiencing any form of constant and relentless pain it is understandable that you may find it challenging, especially when it is daily. It can feel like there is nothing you can do to make it better. This is why developing a mental health condition like anxiety or depression may occur when you are managing the condition.
Having endometriosis may significantly disrupt your day to day life because having that constant pain can make simple tasks a challenge. Endometriosis means that pain is likely to be experienced for extended periods of time, and this can be distressing and cause you to worry that your life will never be the same.
Focussing on your general wellbeing can help to manage the emotional challenges you may be facing. Those who are managing endometriosis advise that activities like taking walks or talking to friends can be really beneficial. Although it may feel tricky to manage emotionally, there are lots of resources, including therapy, that may help you navigate life with your condition.
Getting an endometriosis diagnosis
On average it takes 8 years to get an endometriosis diagnosis. Though you may experience symptoms during this time, medical professionals may not diagnose it for several years and it is a long time to be in pain without getting any treatment. It is important that this time is shortened and women are able to get a quicker diagnosis, so that they can have a better quality of life.
To diagnose endometriosis there is a minimally invasive procedure that you need to go through. As there is a lot of uncertainty around the condition, you might feel anxious about allowing the procedure to go ahead, as you don’t know if it will give you answers about your condition. There is so much that medical professionals are unsure about when it comes to endometriosis including why or what causes it. This makes it harder to diagnose, and because it is a hidden condition, it also makes it hard to detect.
You might feel anxious about waiting for results, which may take longer than another condition would take to diagnose. A lack of information about endometriosis means that this is a possibility. At Smile, one of our therapists Aneesh Shravat offers advice on how to cope with waiting times, observing that “sometimes we just have to sit in a waiting room, waiting for results. Wondering what the consultant or health professional is going to say to us.” Having to wait may cause you to feel stressed or worried, but it is important to try and relax where possible to prevent further feelings of anxiety.
How endometriosis can affect your day to day life
You may find that daily activities are more of a struggle than usual when you are in a significant amount of pain. You may also find yourself socially isolated if you are pulling back from doing activities with others. This can make you feel restricted by the symptoms of your condition and you may be upset that you can’t do everything you could do before your diagnosis.
If you are finding it difficult to navigate daily tasks such as work whilst managing endometriosis, you may find it helpful to hear real life experiences from others who are managing the same condition. On the Smile website, we have a range of blogs written by a community of people who have experienced life with a chronic physical health condition, to help others with their own health journeys. One of our blogs, 'Navigating work with my health conditions' is written by Helen, who talks about having endometriosis and how she manages it in her day to day life.
Dismissal and judgement from others
A really big worry you may have is that because endometriosis pain can be at its worst during periods, other people may be quick to dismiss it. People may assume that it is an overreaction to period cramps which most women will experience in their lifetime. You may be worried that you will be judged if you mention how bad your pain is, for fear of it being dismissed or not taken seriously. This can mean that you may feel like you shouldn’t mention it and bottle up the pain instead. This will only make your pain worse if you are not getting the appropriate treatment.
The symptoms of endometriosis have been normalised because they are similar to standard menstruation pain. This means that research into endometriosis has been largely ignored and therefore many are unaware of the impact the pain has on a person. Often this is due to health inequalities between men and women, as women are less likely to be given the appropriate pain medication and are sometimes not given the same amount of medical attention a man would get.
If this does happen, you may find it tricky to trust others, particularly those within the healthcare system or people who dismiss the condition. Another of our therapists, Tamara Hubbard says, “you know the thoughts that say I didn't do enough, or I didn't do it quickly enough, or good enough. These narratives can lead us to assumptions that just aren’t helpful, which can then lead us to take actions that may make us feel less capable of trusting others and even ourselves.” If you blame yourself for your endometriosis, it may cause further lack of trust and confidence. Therefore, it is important to understand that you are not at fault, and your condition is out of your control.
Endometriosis and fertility
Having endometriosis can mean that it may be more difficult for a woman to get pregnant. Between 30-50% of people with endometriosis experience infertility, which can be really upsetting if you are someone who wants to try for a baby. It may make you feel as though you have ‘failed’ and your body has let you down.
If your partner wants a baby as well, it may put a strain on your relationship and cause difficulty within your partnership. This can affect you emotionally, if your partner is more distant or you are fearful they may leave. It can impact your partner’s mental health too, as they may feel stressed or upset.
The severity of your endometriosis does not affect whether or not you will be able to get pregnant. In a lot of cases women are able to get pregnant with treatment, and with time some are able to conceive naturally even if they previously thought they couldn’t. Having endometriosis doesn’t automatically mean infertility, and it is important to remember that there are still possibilities and options to getting pregnant.
How endometriosis can affect loved ones
Being in pain can mean that someone with endometriosis isn’t able to carry out the tasks that they would have done before their diagnosis, as it may be too painful for them to do. This can be tasks such as daily jobs around the house, or even going out to work. As a loved one, you may find that you have more daily responsibilities in order to support you and your family, which can be stressful.
If someone is not spending as much time with you because of their condition, you may feel as though they are pulling away from you and this can cause you to feel distanced from them. It could put a strain on romantic relationships especially, particularly if you would like to have children together and are experiencing fertility issues because of an endometriosis diagnosis. It can also affect sex and intimacy with your partner, as this might be painful for them. Your partner might feel like because of the impact the condition has on your relationship, that you should help them make decisions about their treatments, which may put you under a lot of pressure and cause you to feel anxious or stressed.
It might be difficult to understand the pain your loved one is going through which might cause them to distance themselves from you if they don’t feel you are doing enough to support them. Though you will want to help them, it will be hard to see them in pain on a daily basis and you might feel helpless knowing you cannot make things better for them. It is not unusual to be emotionally affected by someone else’s endometriosis diagnosis because of these factors.
How to get mental health support when managing endometriosis
Research shows that 48% of people with endometriosis also experience depression or anxiety, sometimes both. The relentless pain of endometriosis can feel overwhelming and restrictive. If you are finding it difficult to manage the emotional effects of the condition, it can lead to a mental health condition developing alongside your endometriosis.
Social support can be really helpful with managing difficult emotional changes. This can sometimes feel tricky, as you may be reluctant to talk to others for fear that they will judge your condition. It can also feel hard to reach out to others if you feel socially restricted by endometriosis. If you don’t get to see friends and family often, you may not feel as though you are able to ask for their support. However, where possible, talking to people can be really beneficial to your general wellbeing. This is why therapy may be another good tool if you feel like you need more support to manage your mental health.
The Smile app is home to expert- led workshops and content, with our team of therapists discussing topics like managing guilt, coping with waiting times, building trust and confidence and EFT for hospital appointments, which talks you through exercises that can help with the anxiety of hospital appointments and waiting for results.
Even if your endometriosis diagnosis feels difficult to manage, there are a range of tools that you can access that may help you to live well with your condition. Though you may feel anxious or overwhelmed, there are lots of ways to make sure that your physical and mental health can be managed simultaneously.
Smile is a mental health app for people managing chronic physical health conditions. To access the resources mentioned above, download the app now from Google Play or Apple App store.