Staying positive/ mind set

[JenRow7]

How do you keep going?!

Until now my pain was manageable. But now nothing helps but codeine. I have 2 kids. I'm exhausted. I'm self employed so missing my work colleagues support network. Plan is to have a hysterectomy but can't have it for a year.

I just feel very stuck. Are GPs supposed to help? How do you get the same person! They tell me I can't take codeine long term but give no other options.

I have a mirena but still lower back pain every day. Now my joints have started aching.

I'm just so fed up. I'm 35! Feel about 65

[Endolemon]

I feel the same, 🤧

I am 46 ,feel like 85. Waiting for hysterectomy too. Always fatigue.

Have been on injections, it helped me with pain. But now my mental health is affected 🤯 So I am taking counselling sessions.

I am on gluten free, lactose free diet which I think might help a little bit with pain too. Any possible opportunity I am staying in bed. Reduced my working hours.

But in general I gave up, just waiting for my operation.

Hope we will be fixed one day sooner or later 🙃

[Kirsty360]

It took a lot of practice (tears and tantrums, the full daily breakdowns) but like Endolemon I saught some CBT therapy.Acceptance was the game changer for me. We are all different and we will all respond in our own ways but pain is exhausting! Throw in life, jobs, relationships it wears you thin!

I lost sight of who I was for a long time, but once I got over the anger of longing for a life I can no longer live I started to learn to live with this chronic illness!

Is it a bad day or just a bad situation/diagnosis, that doesn't mean we have to like the outcome but I don't let it consume me, I go to bed with a heart full of hope and not dejection. Journaling and mindfulness helped massively too.

I recently became an amputee so living with phantom pain and endo has been horrific at times but I didn't want to live a life of misery.

If your GP isn't too keen to offer pain medication, ask for a referral to the pain clinic they can help with the psychological side of things and may even advise your Dr on a med that can help you function.

Gentle hugs 🤗

[JenRow7 in reply to Kirsty360]

Thanks Kirsty. I read your reply then haven't been back on. Amputee and endo that's a lot to cope with. I hope you're phantom pains improve. Pain clinic is a good idea. I didn't know how bad you have to be to "qualify".

I'm going to try and keep a diary as I think I have 2 bad weeks then had a few better days!

[Kirsty360 in reply to JenRow7]

I don't really think there is a criteria for pain as it is subjective, and you are living with a chronic illness that is painful, so regardless I don't think there is an exemption to it. I could be wrong... The diary will be good to track the good days but also the horrific days where it impacts functioning and moods! Show it to a GP/pain consultant. It is so hard and stressful having to prove and advocate for ourselves to be able to get a treatment plan in place. I recently had surgery to tuck the nerves in behind my knee which has some what reduced the phantom pain and the cold weather is warming so that helps massively, I'm not a moody mare as much 🤪

[BloomingMarvellous]

While always reaching out for medical answers - and failing I’ve found the following mega useful. Omega 3 ( the fish not vegan version as it’s really really not the same thing ! ) At the right strength or 850/750 EPA / DHA at least high quality - some say we need at Leat 3,000 a day …I use two teaspoons daily. That really helped with the pains and exhaustion. Pelvic Physio using hypopressives ( try looking at Dr Angie Mullers discussion with Leah Brueg on endo, breathing and pelvic core. I think it’s about podcast 57or 67 on Leah Bruegs site ) . Again helped me with the pain, stamina and fatigue as re oxygenating became an issue for me with the weak pelvic floor , I found Heal Endo book by Katie Edmonds recently and that’s been useful in getting into nuts and bolts of the disease and how to manage. Lastly Ive found the Curable App designed for chronic pain management exceptional. My GP gave me 6 weeks free trial and it’s not expensive to stay on it . They do a standard two week free trial so there’s zero risk to try it.

Absolutely however insist on getting your situation reviewed by specialists. We need the best of both worlds.

[JenRow7 in reply to BloomingMarvellous]

Thanks I'll look into the app and the podcast. Where do you get the omega 3 health store or online?

[BloomingMarvellous in reply to JenRow7]

will DM you

[Moon_maiden]

Have you tried Duloxitine for pain? I’ve found it one of the most useful and use Oramorph occasionally still, so you could still take the codeine at times. I don’t think anything works 100% for the pain, but it’ll depend on what’s wrong/damage etc.

Ask GP for physio referral as well, specifically pelvic/abdominal pain specialist.

Good luck, hope you find something that helps

[JenRow7 in reply to Moon_maiden]

No not heard of it. Do you have to specifically ask your gp for it? They never give me any options

[Moon_maiden in reply to JenRow7]

My GP suggested it but I’d gone through most things by then. It works better for me than Amitriptyline or Pregabalin. It’s worth asking GP about it. I’ve often suggested things to Dr.