Mindfulness and Endometriosis

by Magüi Moreno

Mindfulness has become a trendy topic. Whereas not that long ago mindfulness and meditation were associated with Eastern spiritual practices and new age living; mindfulness has now broken through to the mainstream and is being applied in areas as diverse as education, healthcare, and the business. It's even got politicians interested - the UK Parliament recently held a session discussing the many benefits of mindfulness and its applications in a whole host of policy areas.

But what is mindfulness? Simply put, it is to pay attention to everything in (thoughts, feelings, body sensations) and around (noises, other people's talk, sights, etc) us without passing judgement. Mindfulness is being aware of our judgements, our thoughts... in short, all that passes before and within us. Sounds easy, doesn't it? And don't we do that all day anyway? Think about the last time you were eating: were you savouring every bite, focusing on all the sensations in your mouth, slowly chewing, and just enjoying the mere act of eating? Or were you thinking about all the things you need to get done, replaying a disagreement you had with someone yesterday, or wondering who's going to win 'Strictly' this year? (As well as checking emails, Facebook, Instagram and the weather forecast on your phone)?

Mindfulness if about paying attention to the right here, right now with acceptance - to observe everything as it unfolds. It doesn't require you to do anything (no need to get incense sticks out, or sit in the lotus position for hours). You just need to 'take time out' from our busy lives (a few minutes here and there) to breathe, be aware of your body and of the constant mental chatter in the background. Our brains are designed to never stop producing thoughts - and that's fine. But it is beneficial for the mind itself (as well as the body) to press the 'pause' button sometimes and simply pull back from thoughts and feelings to see them for what they are: thoughts and feelings. As they come, they go.

How is mindfulness good for women suffering endometriosis? Why would we want to be fully present with our pain, our discomfort, our bloating, our fatigue, our mood swings?

1. Mindfulness reduces stress. When your body is in pain, the mind automatically kicks in to try to do something to take the pain away. That's normal. Unfortunately the mind cannot always help, rather it's responsible for creating stress. The mind tends to operate in the past (worrying that something you did or didn't do is the cause for your current pain) and in the future (creating all kinds of dire scenarios in your head). None of this mental chatter helps you deal with your pain RIGHT NOW. In fact, it makes it worse as you get increasingly frustrated, anxious or depressed.
2. Pain is a way for the body to communicate. Turning towards the pain, rather than away from it, can give us lots of information that we can then use to 'fix' the situation - to get treatment, or change current treatment. Pain is a complex set of signals: when, where, intensity, duration, quality (throbbing, pulling, sharp, etc). These are all aspects of pain that we can pay attention to whilst we breathe deeply, physically rest, and keep the thoughts coming and going - rather than getting stuck in them.
3. Mindfulness is not a substitute for medication. For those of us suffering with chronic illnesses, such as endo, the hard truth is that surgery, pills and pain are part of our lives. But it doesn't have to be the whole picture. Let's break the chain of 'It hurts, I medicate' by creating a bit more space for self-discovery in there. You might find that you do less reacting and more responding. What that means is that your actions are more in-tune with what your body actually needs.
4. Above all, mindfulness can help you be more compassionate with yourself. Part of the mind's remit is to judge, assess and categorize reality: 'This is good, this is bad.' Compassion allows us to accept what is (the pain) whilst taking better care of ourselves. We can't magically erase endometriosis, but we can be kinder, less judgemental of ourselves and of others. This allows us to seek support where we can get it (better professional help) and to move on from situations that don't work for us (unsympathetic GPs, unsupportive friends) - with hopefully fewer regrets and resentment.

Endometriosis is an infuriatingly complex disease and mindful living is one of many approaches towards a better quality of life for those who suffer it. It rests on being aware of the present moment, paying attention to and respecting our bodies, and becoming more conscious of how our minds work (and the role they play in creating stress!). It is a journey of self-discovery and awareness of what we do, what we think, what we feel. And it can have a profound impact on our level of contentment, for the better.

Practical ideas:

• Find moments throughout the day when you find it easier to press the 'pause' button in the mental broadcast! Is it whilst doing the dishes, cooking, or taking a shower? Use these moments to practice simply being present in the right here, right now.
• Use your phone to set random bell alarms throughout the day (or the evening, or at weekends) to remind you to stop for 1 minute and simply observe your breath.
• Try conscious breathing exercises when you are relaxed. See below for resources. A simple one is simply to sit and count your breaths up to 20 or 40 (with inhale and exhale being 1).
• If guided relaxation techniques work for you (they don't for everyone!), try listening to them at night whilst lying in bed. This can also help you to doze off and get a good night's sleep! A good place for free audio is yoganidranetwork.org
• When in pain or discomfort, try some simple relaxation or body scan techniques. When pain arises, the brain reacts automatically with thoughts, such as “I hate this, what am I going to do?” Though you can’t stop these first few negative thoughts, you can calm your mind by focusing on your breath. This automatically lessens anxiety levels and increases endorphins. A body scan involves bringing awareness to each body part. When in pain, you’re bringing attention to what the brain wants to move away from. However, instead of immediately reacting to it, the body scan teaches your brain the experience that it can actually be with what’s there.
• Paying attention to the body is a sure way to work through difficult emotions. Just let them unfold (particularly when at home or another safe environment) and observe how they feel in your body. Do you have a lump in your throat? Do you feel a tightness around your chest? You do not need to explain away these sensations. Just let them be and in time, you'll be better able to 'read your body'.
• When going to a medical appointment, or any other potentially stressful meeting, try to focus on your breath before, during and after. A couple of minutes of conscious breathing before can really help settle your mind and your body, so that you can be centred on what you want to achieve.

For more information:

The Mindfulness Solution to Pain by Jon Kabat-Zinn

Mindfulness for Health by Vidyamala Burch and Danny Penman

http://www.breathworks-mindfulness.org.uk for UK-based courses and resources on mindfulness for chronic illness

http://www.endoyoga.com for Yoga and Breathing Exercises for Endometriosis and Pelvic Pain

http://alwayswellwithin.com/body-scan-meditation/ for helpful videos with guided body scans

A curious thing

Submitted by Fiona King

Endometriosis is a curious thing.  It presents itself in ways that makes the sufferer believe that it might be nothing; just a bad period is all.  It makes you think that what others are saying to you is true, that you're simply over thinking things and it’s nothing to worry about.  It lingers, settles in, and takes its time to do its job of massacring your insides. You don't know how long it’s been like that, all the time, or most of the time? Who knows? All I know now is that I have it.

My early teens consisted of dealing with it. Just how it is, millions of females the world over and they go through this period malarkey every month so why can't I? So I dealt with it. Alone.

My late teens and twenties consisted of questioning it.  I think this unusual discharge is not normal, are you sure you found nothing in the barrage of tests?  Are you sure it’s just thrush/infection? Being put on the pill by my mum at 17 was probably the best thing that could have happened. Not to treat Endo you understand but as I was about to embark on my first holiday with my friends my mum thought it best to 'prepare' me. Best thing ever.

My mid to late twenties were when I demanded to speak to someone other than a GP.  I had come off the pill when I was around 23 due to breakthrough bleeding and I just wanted to be hormone free for a while. Big mistake as it all sprouted wings and flew about my insides. So it was when I was around 27 years old I eventually saw a Gynaecologist, she didn't take me seriously at all. Eventually she agreed to a laparoscopy.

This is when it got very interesting for me. I saw first-hand how negatively a person can react when they are proven wrong.  In this case it was my gynaecologist.  She practically yelled at me after the surgery 'why didn't you tell me about the pain?’ Sorry doc, my bad.  You see my left ovary was stuck down to my pelvic wall with adhesions.  I should have had significant pain but I hadn't as I only had this vaginal discharge and having two periods a month (my big one and my little one I used to call them)

My late twenties and early thirties were all about research and information gathering. What is this affliction? Is there a cure? Interestingly enough I was told by the same Gynaecologist that it was all gone 'I'm cured'. I asked if it would come back and 'no' was the answer.  I never saw that Gynaecologist again.

It came back. Five years later and I had moved address and surgeries since then and got a new GP who instantly referred me to a Gynaecologist who spoke to me like I was an adult and I was put through the usual pill trials (again) but couldn't settle for that so after discussing the options it was agreed to have my third laparoscopy. I was in a new hospital, new doctor. The treatment was so much better.  I may not be cured; I didn’t ask if it will come back and the most important of all I was more in control of the advice I receive and the treatment I undertake.

You see Endometriosis is a curious thing, the treatment also rather curious but the medical profession well, I feel is the most curious of all.

Glasgow support group - why did it start?

 

 Why did it all start?  

Stephanie McCulloch - Support group leader & founder 

 

For the average women, being 22 years of age brings with it few health worries.  You can have this wonderful abundance of energy, can work long hours and still dance the night away.  I thought I was an average 22 year old and yes I did work hard and party often as well as travelling.  In 2009 there was the golden age of the cheap flights, it wasn't uncommon to be going across the water onto the continent for a long weekend every other month.

It was during one of these long weekends that I started to feel unwell.  (Berlin, 40 quid return, those were the days).  Upon return I realised I was ridiculously bloated and strangely sore.  With my period looming, I decided to go for a run in a bid to reduce the usual but 'normal' excruciatingly sore period pain.

Running wasn't a regular pastime of mine however I thought I would give it a try to get some endorphins going.  I hunted out that fluorescent pink Nike windbreaker which I'd bought in the charity shop for Death Disco (nightclub thing-no longer runs) and set off into the park.  It started off okay, a light and gentle jog and then as each step went this awful pain set in that got worse and worse until I collapsed in the park.  Ambulance, gas and air , hospital and a dose of painkillers........back home.

Fast forward a week or so and I'm sitting in the hospital as a lady is scanning my abdomen with ultrasound.  She looks puzzled and horrified, I ask her what's wrong however she excuses herself.  I'm lying there wondering what on earth is wrong with her not thinking that it's me with the problems.  She informs me that I have to go and see my GP immediately and that she's arranged an appointment.  Thankfully the GP surgery was only a ten minute walk from this particular hospital and yes, I was careful not to run.

My doctor broke the news that I shouldn't be doing any exercise due to the fact there is a 10cm cyst on my right ovary.....  '' A WHAT???'' I cried....   I was told not to worry and that it can be easily removed via an emergency operation.  A month down the line and I'm in hospital.  I wake up attached to a morphine drip and a while later my consultant arrives to show me photo's of my insides.  I remember he was a kind man and wanted tell me himself the outcome of the operation.  Pointing at some little black dots he tells me I have endometriosis.   Of course I was absolutely intoxicated on morphine so I had little recollection of what exactly he told me.  

A while later I get a letter from the consultant to let me know that the cyst was benign and that he had diagnosed me with stage 4 endometriosis.  So therein began the challenging and confusing journey with this illness.  I turned to Endometriosis UK for help and information.  They were very supportive.  As time went on, I decided that if there was any hope in understanding and coping with this illness then I had to try and bring together as many women as possible who are also struggling with the illness.  

In 2012 I went for my support group leader training and started running sessions in 2013.  Things were quite intermittent due to uni and my poor health.  However last year we welcomed Emma as our co-leader.  We have since been running regular monthly meet ups.  We try to create a safe peer-supported environment for women to be able to come together to share frustrations and learn from one another.  We also arrange fund-raising and awareness raising events. It's been really rewarding running a group and I am indebted to the women who attend.  I think I would find it a lot harder to cope if I didn't have the support from all the group members.  It takes real bravery to attend a support group, to take that step in finding help and approaching a room full of strangers.  So I thank with all my heart the women who take the time to contribute to our group sessions, whether that's in person or via our Facebook group.

I'm starting this blog in order to document our journey together, I hope that we can share reflections from events we organise, treatments we try and success stories in order to share the good times, the bad and the hopes for the future.  I  invite group members to contribute and then whoever is interested can have a little insight into the world of the Endometriosis UK Glasgow Support group.*
We have some exciting things in the pipeline such as a Yoga class for endometriosis as well as an information day.  We hope to share many of our experiences here on this blog.

So, I'm not 22 any more, I am now 28 (and a half) - I still manage to work hard and party (occasionally) although I am now in much better tune with my body so know when to slow things down.  I do have 6 years experience of coping with this illness and have recently embarked on a treatment plan of herbal therapy and nutrition.  I'll also be going for abdominal therapy  next weekend which I'm really excited about.  I look forward to sharing these experiences with everyone. 

any views expressed are of the volunteers/group members and are not the views of the charity unless explicitly written.