Living with endometriosis
Written by Dr Catherine Hyatt
, 4 min read
We’ve said it once and we’ll say it again. “Extreme Period Pain is not normal. Period.”
This year, to mark endometriosis awareness month, we wanted to explore endo a bit more. What is it like to live with endometriosis and how can we support you day to day?
Endometriosis and mental health
With any long-term condition, supporting your mental as well as physical health is important. For many, finding out they have endometriosis can take a long time, with time to diagnosis taking on average 7.5 years.1 This in itself can take a toll on mental health as the symptoms and uncertainty can be very distressing.
Once diagnosed, anxiety, depression and other psychological changes are commonly reported with endometriosis so if you are experiencing these, you are not alone. However, you may be wondering what to do next.
- Talk to Babylon - our clinicians can support you and work out the best pathways for you to access psychological support in your area
- Join your local support group - there are loads of local, national, even global endometriosis support groups. Talking to others with lived experience of Endometriosis can be really powerful and make you feel truly seen and heard.2
- Talk to your hospital team - many people with endometriosis are under the care of a specialist team. This is generally a multi-disciplinary team (or MDT). What this means in practice is that there are a group of clinicians who work together with you to help manage all sides of your endo. This can be psychological support as well as targeting symptoms which may be impacting your mental health, for example, seeing a pain specialist.
If someone you love has endometriosis, understanding what endo is and how it impacts on them can be a really big way to support them. Listening, learning and adapting when needed can all support the person you love.
Endometriosis and work:
For some people with endometriosis, work can be a major source of stress, particularly if you find yourself experiencing significant fatigue or heavy bleeding every month.
Planning work can sometimes be easier said than done when you have endometriosis but knowing your cycle can be a good first step.
What time of your cycle do your symptoms generally flare? Is there a better time of the day/ week/month for you to have meetings or do certain projects?
Whilst it’s not always possible in every job to have this flexibility, having open conversations with work can be a good idea. Letting your boss (or yourself if you are self-employed!) know what endometriosis is (and no, it’s not just ‘that time of the month’) can help them understand more what adjustments, if any, may need to be made.
We understand that getting everyone in your life up to speed about endometriosis may be hard so signposting colleagues to some reading materials or having an awareness session on endometriosis can be a helpful thing to do if you find yourself having the same conversation on loop.3
Endometriosis and sex:
Some people with endometriosis can experience pain with sex. This can be a big deal as safe, consensual sex is an important part of relationships with yourself and others.
Your sex life is important. If you are experiencing pain or you are worrying about symptoms related to sex, we can talk to you about this. Yes, really. We often speak to our patients about sex and painful sex can be an indicator that something is going on physically or psychologically.
Having open conversations with your sexual partners is also something to think about. Their understanding of endo and how it impacts on your sex life can be integral to having the sex life you want.4
Endometriosis and fertility:
Not everyone wants children but for those who do, endometriosis may cause some complications. It’s important to say that not every person with endometriosis who wants a baby will have difficulty conceiving,
However, for those who do, rest assured there are options. Remember that MDT I mentioned earlier? Often that includes a fertility specialist to support you on your journey. So if you need no treatment or a helping hand with fertility treatments such as IVF, this can be looked into.5
If endometriosis is part of your health journey, you may experience moments that overwhelm you but knowing more about your body and endometriosis itself can really help manage your symptoms and help you live the life you want to lead.
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1. Menstrual Wellbeing Toolkit. RCGP, 2021, https://elearning.rcgp.org.uk/mod/book/view.php?id=12534&chapterid=327
2. Endometriosis, NHS, Reviewed January 2019, https://www.nhs.uk/conditions/endometriosis/
3. APPG on Endometriosis Inquiry Report 2020, APPG on Endometriosis, 2020, https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf
4. Let's talk about sex and endometriosis, BMJ, 2014, https://srh.bmj.com/content/40/1/8
5. Complications, NHS, Reviewed 2019, https://www.nhs.uk/conditions/endometriosis/complications/
The information provided is for educational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Seek the advice of a doctor with any questions you may have regarding a medical condition. Never delay seeking or disregard professional medical advice because of something you have read here.