Really struggling to cope with pain and e... - Endometriosis UK

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Really struggling to cope with pain and everything tonight

_Tamsin_ profile image
6 Replies

Hey everyone. I am having a really bad night. I am sleeping so badly recently due to the pain. Unfortunately my amitriptyline is no longer working like a sleeping pill and I am lying awake for hours most nights in pain. I feel like adrenaline is pumping through my body. I can feel the stress this pain is having on my body. I have had a very difficult time lately with my recent increase in pain an hospital admission. I am just exhausted from all of this and finding it difficult to cope tonight. I am in a bit of an anxious state because I am scared by this level of pain and I have taken the maximum dose of all my painkillers. I can't even explain how exhausted and frustrated I am. I have coped with everything well, I think I am quite a strong person but some days are just very difficult. It really is pushing me. I have to really fight to keep strong, keep going and not let the endo win. I just can't believe this is happening, a year ago it was only just starting and I had no idea it would ever get this bad. My teen years were difficult for me for lots of reasons and I went through a lot. Now I am nearly 21 and being tested even more when I should be out enjoying myself! My boyfriend is sleeping next to me but I feel alone, scared and vulnerable.

Thank you for reading this and simply being here. We all have our difficult moments where we struggle to cope and it's so helpful to speak to others who understand. I hope you are all having a more peaceful night than mine! X

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6 Replies

Hi Tamsin, never feel alone! But also never feel that being alone is a bad thing, sometimes we need that time to recharge and focus inwardly on what our body is trying to tell us. I met a wonderful holistic doctor a few years ago who told me that my body was trying to tell me something that my mind had not listened to yet or was ready to hear. He was right, I am currently reading Molecules of Emotions by Candice Pert. You might find it helpful. Also The Four Agreements I have on audio book is wonderful as I also have a very painful past that at 41 I am only just learning to deal with. amazon.co.uk/dp/1878424319/.... I hope this helps. I truly believe that empowering ourselves and our emotional confidence is the best way to heal alongside modern day medicine. Good luck and don't hesitate to ask more questions if you need to. Big hugs and you're not alone. Jen

daffodil profile image
daffodil

Hi Tamsin -so sorry to hear you are still struggling. I have been like this since October last year-just unable to sleep( even on max doses of 3different types painkiller -dihydrocodeine,gabapentin and buscopan) .Finally when I got to see gynae in March I broke down and said I was in so much pain I was actually wondering how many dihydro I would need to take to take the pain away and she sort of sat up ! She was very so kind and said there was NO reason in this day and age that anyone should be in so much pain that they cant sleep( even if as with me we are still awaiting further diagnosis of what causing the pain).She has referred me back to pain clinic -have you been to one?Also I mentioned that in the past when I had extreme flares of endo I had been given a sleeping tablet at night.My GP ,although very supportive had refused before as she says Im taking enough to knock out an elephant.So I am now on zopliclone(1 tablet at night) and it knocks me out all night.I am now taking 2 less dihydro,2 less buscopan per 24hr period and even when I wake up I do not immediately need to reach for the pills before I can get out of bed.My sis,who is in science,saysit may be that the sleeping tablets has some sort of long term sedative which is working longer than just during the night.I know theses can be addictive,but would it be worth asking your GP?Even if you just had a weeks supply to take on the worst nights?

I cant tell you how big a difference this one sleeping pill has made ,as really I was getting almost suicidal with the pain and the not sleeping longterm.Lack of sleep is used to torture and without proper relaxed sleep our bodies cant heal.

Are you still at uni or have you stopped term?

Yazza profile image
Yazza

You most certainly not alone my endo dispite being minimal 12 months ago is now causing me pain everyday it's affecting my bowel bladder back (kidneys) and my cycle is only 21 days and at the time of my period the pain finds a whole new level!

However I do take zopicline to sleep and it's amazing but addictive but I'd rather sleep than suffer round the clock!

It may be worth a try (if the doctor will let you) although I do struggle when I wake up with pain that is..

But I wish you well and hope sleep doesn't allude you tonight. Xx

whisperenergy profile image
whisperenergy

I know how you all feel. I don't sleep well due to pain as well. I'm hoping my doc will give me something to help me sleep tomrw. I feel at least if I got a good sleep I cld cope better with the pain and discomfort during the day. Wishing you all a restful night zzzzz........

dollypop1994 profile image
dollypop1994

Hi,

I know how you feel :( I am 19 & suffering from severe endometriosis as well as loads of other problems & needing major surgery soon. It's totally ruining my life at the moment as I am constantly exhausted & in so much pain. I've battled depression on & off since my teens as I have had a difficult life for loads of reasons & I think if it wasn't for my man I would have given up.

Since my last laparoscopy I have been practically housebound & in & out of hospital & it's so frustrating- wish I could enjoy my life cuz I'm 19 but feel 90! I am really scared about my next op too & feel like nobody understands me.

For your sleeping ask your dr about Dosulepin- it's pretty helpful. For the pain ask for tramadol & co-dydramol (dont take stuff like ibuprofen cuz it can cause irritation) also try Tiger Balm Red cuz it really helps. I'm having a bad night too & think it's going to be a long one! If you want to talk I'm here xx

_Tamsin_ profile image
_Tamsin_

Hey everyone thanks so much for the replies! Obviously i'm not glad that you all have difficult nights as well but it helps to feel that i'm not alone. For me, pain at night seems the most difficult for me to cope with and things feel more depressing at night!

Daffodil - I have finished uni now for the summer so at least I have a chance to rest. I'm looking for a job at the moment.

Dollypop - sorry to hear that you have had a very difficult time throughout your teen years and that you are still struggling. I will message you.

Thanks again for your support everyone. Finally had a good sleep last night, but the night before was another bad one and the next day I was sick twice from exhaustion I think! Mentally I am feeling okay and coping well. I am seeing my gynecologist tomorrow to discuss the next steps. I usually start crying during these appointments

X

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