Psychological battle of endo: How do u cope... - Endometriosis UK

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Psychological battle of endo

MrsNGoo profile image
8 Replies

How do u cope mentally?

I myself not well I sleep most of the day every day, I don’t eat properly, don’t exercise anymore. I wake and wish to b well or it to just end. When I dream I am not sick I can do things but when I wake I hit the reality of endo.

This endo game is both cruel physically and mentally. I deal with the physical but it’s the mental that gets me.

How do u face each day?

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MrsNGoo profile image
MrsNGoo
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8 Replies
princessk09 profile image
princessk09

Hey, I’ve just started yoga and mediating to sort of relax. Also I use an app called headspace. You get free 10 days and you can use them over and over again. It’s mindfulness so it sort of helps you relax, live in the moment etc.

It may be worth a try. You’re not alone with this as I have days I just cry and want to scream due to the pain.

MrsNGoo profile image
MrsNGoo in reply to princessk09

Thanks yea I had thought I should get into yoga or Pilates meditation ect

Holleymuzz profile image
Holleymuzz in reply to MrsNGoo

Every day I struggle with one symptom or another. I have degenerative disk disease and I’m deaf due to rare disease I contracted as a child. I also have hernia. Iv been tempted with yoga but battling with motivation due to depression caused by all my conditions. If it’s not endo it’s one of the others. It’s like they have a meeting at night and decided who’s on shift the following day.. meh I sympathise with you x

Starry profile image
Starry

It's very hard as there's a risk of a downward spiral, endo causes which reduces activity which causes depression which reduces motavation and activity further and makes you susceptible to pain and less physically able.

When I was largely bed ridden I set myself very little tiny goals initially, get up at a sensible time and get dressed, make the bed, get to the end of the drive and back, then stretched them gradually. Do a lap of the garden, take the dog to the end of the road etc.

I buddies up with some ladies here at the same post op stage and we gave each other support and encouragement for a while.

There are some good apps like head space or think up to try to get a more positive mindset and help motivation.

Getting seen by a pain specialist and finding the right medication (I'm now on pregabalin) has helped me a lot as it helped me sleep and getting a decent night sleep has a massive physical effect on your body and healing as well as your mind. It's also helped my anxiety. I had been sleep deprived for years and it has helped me get to a place where I could at least function again.

I struggle with all forms of exercise atm but my rescue dog gets me out for a walk every day. I did try swimming but it's too early. The pool was nice and warm though to sit in and do gentle movements.

Eating well can really help endo symptoms especially bloating and having gone on a downward spiral of not eating with food anxiety after surgery to the point where I had my hair falling out I can really say when it's not right it can really make you more unwell. Could you perhaps make a mini project to make nice fresh food snacks. I tried all sorts but bizarrely found an anti inflammatory diet called the acid watcher diet by Dr Aviv most helpful in changing my lifestyle, along with cutting gluten and dairy. But baby steps. I started just with making smoothies, then adding fresh snacks to replace chocolate and crisps, for me raw carrot, dates, and cantaloupe melon.

Most of all, if you are struggling emotionally do tell your GP and get referred or find the support of a good BACP counsellor independently. Most only charge what you can afford.

Take care of you, you aren't alone and lots of us here are and have been where you are now. But things can improve.

It is so hard.

I found yoga really helpful - even doing YouTube videos at home (look up Sarah Beth - her channel is great, nice balance and not too strenuous). For me, getting into the habit of doing one short (10 minutes!) video per day was ideal - it was tough for the first week, but then started noticing it getting easier every day.

My hubby has started a new habit which I have pinched - writing down a list of all the good things that have happened in the previous week. It's best to physically write it down and stick it up somewhere visible - so you are reminded that despite the endo there are lots of good things in life (even if those things are simple and small).

I keep a list of little things that I enjoy doing - take a walk, make a nice meal, have a bath, talk to family - and if I'm in a particularly negative mood this gives me a ready-made list of little things that will help.

Probably the hardest thing for me (after endo and fertility issues) has been making a life worth living, even with the prospect of not being able to have children. To counter this, I like to take stock regularly and think about where I would like to be and what I would like to do in a year's time - again, even if the goals aren't huge, it at least gives me something to focus on other than my health issues and the frustration of dealing with the system. Makes me feel I have some control over something. Still don't speak very good French (my latest goal), but hey.

Have you heard of The Spoon Theory for chronic pain? also worth a google.

Hope this helps and don't forget there's always somebody out there to listen.

Fabbird profile image
Fabbird

Hi, sounds tough.

One thing that really helped me was reading an article about the psychology of pain. We tend to take pain very seriously and give it our full attention. That’s absolutely appropriate if it’s sudden acute pain. We need to do something about it. But with chronic pain it’s different. If we give it our full attention it simply drives us into the ground. We need to find ways to side line it. I have increasingly tried to disregard my pain. It’s hard, especially if the pain is stronger than usual, but I think it works. I try to keep to a steady daily routine regardless and only alter plans if I’m really unable to carry on.

I hope you fell better soon.

JellyKat profile image
JellyKat

What helped me a lot was attending a pain clinic. They take you through the psychological aspects of it, help you recognise the relationship between you and your pain and how you can improve it. They guide you through evaluating how you spend your time, how you communicate with others... also practical advice on stretches and exercises to do and mindfulness.

Its also good for meeting other people in a similar situation x

MrsNGoo profile image
MrsNGoo

Thankyou so much for your support on this

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