How to support someone with endometriosis

When I tell people I have endometriosis people are shocked about how common the illness is they feel sad that they’ve never heard about it before. As I start to get to know people more long term the best, and most supportive people around me are the one’s most willing to understand what I go through.

I’m happy to say that I am frequently asked what more someone can do to help me with my illness, but there are still plenty of people who don’t ask, or are afraid to ask, so this update is for the people in your life that could stand how to support you more.

Understand that Endometriosis is incurable

Firstly, you might appreciate reading about what endometriosis is, and what the pain feels like.

Endometriosis is a complicated illness. We’re not entirely certain what causes it (although there are some theories) so while we’re not certain of the cause, we can’t be certain of the cure. Everyone with endometriosis has to manage their pain and fatigue long term, using a series of coping mechanisms, surgical treatments, hormonal treatments and pain management.

This means that someone that has endometriosis will have numerous treatments throughout their life, and although short term illness requiring surgery will mean permanent improvement in quality of life, people with endometriosis require regular and constant treatment to maintain a good quality of life.

Neither pregnancy nor the menopause are a guarantee for relief either, it very much depends on the individual.

What this means for you:

You may notice that the person you know with endometriosis has surgery every few years or so, you find yourself thinking “why are they having surgery again, aren’t they fixed up from the last time?”. Try to understand that it’s a long-term illness with no definitive solution, the endometriosis in someone’s system can grow back and cause more pain and discomfort, months or years after surgery requiring constant care.

A big part of learning to live with endometriosis is coming to terms with the fact that it may not ever leave you. You need to step up and become part of the support team of your loved one and help them accept their illness. Some people may never accept their illness, but either way it’s about helping them to find out what they can still do despite being ill rather than what they can no longer do.

Appreciate that endometriosis varies and fluctuates

No two days are the same with endometriosis. Sometimes I am well and can achieve a lot, some days I struggle to walk. It’s the random element of this disease that proves to be one of its biggest frustrations. I won’t know how much energy I’ll have for the day until I open my eyes. Sometimes I can accomplish a great deal with no payback for pain, and other days even bending or lifting something once can exhaust me.

Confusingly, many of us with endometriosis never experience any symptoms at all, and only find out something is wrong when we start to have a family. Some only feel pain for a few days a month, some are in pain all the time. It’s an extremely varied illness.

What this means for you:

Try not to be confused or frustrated when someone with endometriosis can manage to do something one day, but fails to do it the next. Understand that body strength, pain tolerance and energy levels go up and down every day and throughout a day depending on how much you try to do. Appreciate that chronic fatigue means that we cannot easily recover energy like you can (by resting, eating, sleeping or drinking coffee).

Let the person you know with endometriosis take the lead on what they can’t and can manage. Over time, and with acceptance of their illness they’ll learn how to ask you for help, and understand their levels of pain. Appreciate that while you’ll want to help with everything initially (as you feel it’s one of the few ways that you can help) that the loss of independence that comes with asking for help is a complicated and emotive issue.

Realise that endometriosis is painfully, painfully common

Endometriosis is as common as diabetes, with 1 in 10 women effected totalling 1.5 million women in the UK alone. Most people haven’t heard of it, and this is because of a historical stigma that surrounds discussing all illnesses. This is made harder by the fact that endometriosis usually involves the female reproductive system and periods. Subjects that most people won’t talk readily, let alone want to know about when they go wrong.

The good news is that the endometriosis community and charities like Endometriosis UK are doing everything they can to raise awareness of this awful disease. Cancer was once talked about in hushed tones, and it’s perfectly possible for us to turn around how this illness is perceived and talked about.

What this means for you:

Don’t be afraid to talk about endometriosis, we need more people to talk about it and help share our story. The more people that talk about it, the less of a stigma that it’ll become. Ask lots of questions, try to find out more about the illness, knowledge and understanding goes a long way.

Be prepared to help

Any long term illness is tiring. A relatively normal day of activity requires a lot of hard work and forward planning on the part of the person that’s suffering. We normally have a limit energy budget for the day/week ahead, and this (like our illness) fluctuates from day to day depending on how much we have to do, how much pain we’re in, and how much energy might be left from the previous day.

Chronic fatigue is one of the frequently overlooked symptoms of endometriosis, but it’s also one of the most common, and among the trickiest to manage with (alongside pain). When you’re pain filled, your stress levels tend to rise, and it becomes harder to think, form sentences, remember things, perform actions or even speak calmly.

What this means for you:

The expert on this illness is in the same room as you. Learn to listen, and listen well. Learn to recognise the tell tale signs of pain in your loved one, and realise when the smile and the strength is a disguise. It’s a skill that they will come to appreciate and rely on dearly. Acknowledge pain and get a sense of whether or not your loved one wants you to do something about it, or just wants to be treated normally that day, because their needs will change day by day.

Give specific offers of help rather than vague offers. It’s hard to formulate what you want when you’re in pain, questions like “would you like a cup of tea?” or “can I carry that for you?” are much more inventive and reliable than “can I give you any help?”. This means we have to think of the help as well as ask for it. The brief moments of reprieve from the pain, and those small gestures of kindness are what keep us going.

Don’t forget the specific things you can do to help

  • Read about the list of endometriosis symptoms and understand how what symptoms might be effecting the person you know.
  • Research endometriosis online – equip yourself with as much information as possible
  • Find out what you can still do together, and make suggestions for replacements for things they can no longer do
  • Find some time to have fun together
  • Accept there will be setbacks and hard days
  • Find some help for yourself, there are sources of support and counselling for friends, family and partners of those suffering with endometriosis

Thank you for reading this far, if you’re supporting someone with endometriosis, you’ve already taken a big step to helping them manage better by taking the time to learn more.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

15 responses to “How to support someone with endometriosis

  1. C

    This helps me a lot. Cant wait to ask my boyfriend to read it with me tonight! Thanks again for sharing

  2. Thank you for this it is really helpful. If it’s ok with you I am going to share this on my site healthyhappycoeliac.com under Experience, Endometriosis. I have Endometriosis also and I think this will help others-I will link back to you. Please let me know if you are not happy with me doing this. Many thanks Rahna. P.s you may like some of my recipes as suitable for the Endo diet. x

  3. Josie

    I really cannot thank you enough. I am wrecked from this disease. It has completely changed my life and my ability to keep friends now that I am not the energetic person I once was. It affects my job and even though I troup on at work and socially as best I can I can see I am seen as flaky now aa just cannot keep up. I got incredibly lucky with IVF and… after all the promises that having a baby would help reduce adhesions, reduce pain and bleeding.. there I was three months after giving birth curled up on the bathroom floor in tears and agony. Just now with more sleep deprivation and a young baby to care for. My new GP says I have post natal depression ! He just will not listen that my exhaustion and joint\body pain is the endo back again. It is infuriating. So much more awareness of this condition is needed. Thank you so much on behalf of so many women for this website.

    • Hi Josie, I’m sorry you’ve had such a hard time getting support from your medical professionals. Endometriosis doesn’t seem to be appreciated as the immensely difficult long term illness that is really is. I can only urge you to continue to ask for support from your doctor. Be persistant, ask them for access to the pain clinic in your area, ask for self management advice, ask what local support groups are out there. It’s possible to manage with but you need the right amount of support especially when you’re a new mum. I hope you get the help you need. Don’t let anyone persuade you that your illness isn’t “serious” it’s impacting your quality of life and it’s important to you.

  4. Rosario

    I’m going on an overnight trip soon with a friend that has endo, im so scared that she’s going to be in a lot of pain and that I won’t be able to assist her, but this definitely helped, thank you.

    • Thanks – it’s always lovely to get feedback from others who are supporting people with endometriosis. You’re already doing a great job by trying to research to help your friend, thank you for your empathy and compassion. 🙂

  5. This has been so helpful, because my wife is a sufferer endomitroisis . I have always supported her, looking at her face I will immediately know something is going on.most times she tells am fine. Then I draw closer. I will always come here for information on how to show more care.

  6. Craig

    My partner has been ill and slowly getting worse over a 10 year period. She was recently diagnosed with stage 4 endomitroisis and has had surgery after being miss diagnosed several times. This is a great guide especially the approach to offering help. My partner at times feels helpless I find that turning up with a fresh cup of coffee or a bar of chocolates can lift her spirits. Its not an easy illness to live with and we have been close to breaking point on more than one occasion. Awareness of this illness is still very low and some of the doctors we’ve been to see are less than helpful.

  7. Brandy McGill

    I’ve been going back and forth to dr for years and I’ve been doing my own research I really come to see that this is me, how do I talk to my dr about this

  8. Ana Belen Muñoz Calzadilla

    Tengo endometriosis. Me está matando lentamente,en casa no entienden que un día este semibien y al otro este en cama rabiando de dolor y para más unirme por estar enferma y no rendir me an tirado del trabajo . Muy formales diciendo mejor quédate en casa y cuando mejores vuelves . La endometriosis me está robando toda mi vida y mi ser .los médicos me pusieron a mirena y tomo 13 pastillas al día para el dolor y una que le dicen de rescate para cuando quiero morirme . Hasta enero tengo que aguantar así. Los ginecólogos dieron 6 meses para ver si mirena ayuda , llevo casi 3 y esto es orrible . No se si podré aguantar hasta enero . Hoy por hoy estoy tan arta y cansada que sólo quiero morirme ya de una vez . Entonces ya dejaré de sufrir.

  9. Amor

    Hi there, I’ve got a friend who suffers from endometriosis and I’ve started collecting information on how can i help her, it’s been a little bit difficult because she’s not really open about it (now i can understand a little bit better why), but this helps a lot. Thank you!!

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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