I’m looking for some advice, I really don’t know what to do as I feel like I’m being dismissed all the time and it’s really starting to affect my overall physical and mental well-being.
I have now had three surgery’s for endometriosis, my most recent last year, they told me I now have adenomyosis & that they removed a new growth they found in my pouch of Douglass - however over the last couple of months I have been woken up almost every week around 1:00 am or 2:00am with severe abdominal & rectum pain. One two occasions I have gone to the hospital whilst experiencing this pain (as is only healthcare facility that is open in the early hours of the morning) as my painkillers haven’t touched the pain ( I have Codeine & Tramadol which I take on a Only when required basis) only to be told by hospital doctor to wait for specialist appointment with gynae and been sent back home with painkillers.
The painkillers I have aren’t working and they are the strongest ones the doctor is allowed to prescribe, I have also tried using hot water bottles to try and help, it does help a little but not that much.
I’m literally crying myself to sleep and then having to phone in sick to work as I’m too sleep deprived to function the next day to the point that I’m unable to drive to work.
I have tried to bring my appointment forward, but have had no luck and have to wait. So I’m at a loss of what to do as I can’t keep having sleepless nights and days off of work. I have also spoken to my GP about this and was told that I should take the painkillers when I feel pain coming on. Did explain to my GP that I don’t feel it coming on as it wakes me from a deep sleep therefore I am unable to take them to prevent me from feeling it, but take them as soon as it wakes me from sleep.
Does anyone know of any other pain relief methods I could try in the meantime ? I’m at the point where I will try anything as I just want a decent pain free night of sleep.
Any advice would be greatly appreciated.
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Winter4044
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My heart goes out to you this sounds absolutely awful! Unfortunately pain relief methods are limited but maybe you could try a tens machine? They're not supposed to be slept with them on (and it gives out a funny sensation which might stop you sleeping anyway) but it might help to lower your pain level to the point where you can sleep afterwards. There's a good one from Lloyds with 4 pads that's only about £20.
One thing I use all the time to help with sleeping with the pain is I have one of those giant pregnancy pillows, it's not pain relief per se but it does keep your back and pelvis in a lovely comfortable position which eases it a little and might help you to not wake up with the pain.
I hope this is helpful and I really really hope you find a solution to this xx
Thank you for taking the time to read my comment and for your advice.
I haven’t tried a Tens Machine before, as a friend of mine had one told me about the funny feelings they give and she kinda put me off getting one. But I will now go get one to try and see if it will make a difference.
I haven’t used a pregnancy pillow before, is it better to use than a Vshape pillow ?
You're very welcome, I agree a tens machine can give you a funny sensation but it does numb the pain for me so it's worth a try.
And yes a big pregnancy pillow is much better than a v shaped one, they go right down so you can wrap your leg over it and use the other side to support your back, super comfortable. Only downside is it takes up a good chunk of room in the bed! You can get decent ones on Amazon for about 20 quid so it's not too expensive to try one xx
I’m sorry you’re getting such extreme pain, it sounds agony! Are you already on a drug like Nortriptyline? I take that at night for my fibromyalgia pain. It helps with sleep and with nerve pain, and I take it every night.
I also use hot water bottles and lots of cushion support in bed.
What pain relief do they give you? Is it codeine or morphine? If I take codeine it makes me constipated very quickly and I get pain with it.
I’m sorry I can’t be much help, and I really hope you find the cause of your pain episodes and something that helps. X
for constipation drink lots of peppermint tea before and after taking codeine or any pain relief with codeine in. J been drinking this in and out of hospital admissions as I can not bare it be having pain for constipation whilst having severe endo pain.
That sounds awful. Endometriosis pain is bad enough without being sleep deprived too.
If the painkillers you’re on aren’t working could you request something a little different like an anti inflammatory?
I was taking Naproxen on a as and when needed basis for my pain and it was pretty effective. I could take 1 just before bed to see me through to the morning. Takes a few days to get in your system though.
My doctor also prescribed me amitriptyline but I never got round to trying it as it was something you had to take all the time, not just when in pain. He said it was a pain blocker and a side affect was drowziness so good to take before bed to help you sleep?
Otherwise I relied on hot water bottles & pillows in the night. I started taking CBD oil too which has been amazing between periods but not experienced a flare up with it yet.
Thank you for replying and for sharing your experiences with me, really appreciate it.
I was prescribed Amitriptyline to take two years ago, it did help me sleep however had to stop it as not only did it keep making me feel really nauseous upon waking in the morning, but It was like I was on auto pilot and not really aware of what I was doing and taking anything in - felt like I was constantly in a daze.
At the moment I’m heavily reliant on hot water bottles and hot beanies but these just aren’t working with this pain
I think I will get a Tens Machine to try for when I have another episode and see if that helps ease the pain so I can get some sleep.
Hi Violet. I don’t really have anything to offer that hasn’t already been said before and just want to express how shit this must be for you. It sounds horrific and I hope you find a way through.
I did wonder though if you have tried tracking the pain? This helped me in discovering some triggers that make my pain worse. It’s tedious to keep a diary of everything (what you’ve ate, stress levels, exercises, food etc.) but if you could link it to something then you might be able to take the pain killers before it gets too unmanageable?
I realise this might be a useless suggestion and potentially something you have tried before.
Jesus, who performed this laparoscopies? It sounds like they were very superficial if you're still in this much pain, unless the pain is due to adenomyosis. Can you describe it more or tell us what this pain may be due to?
After my last operation they mentioned that I had developed adenomyosis but said that this wouldn’t affect me as it is very small.
I was pain free up until two months ago, when I suddenly started getting woken up from sleep by really bad period pains / Cramps.
During the day I’m fine but do get the odd pain here / there every now and then but that’s all and it’s manageable. However when this pain wakes me up in the early hours of the morning it’s a different type of pain and it’s like I’m being stabbed repeatedly in the left side of my groin.
I have started to track when I’m getting it / how often and what time it is waking me - the pain is waking me up at roughly the same time every morning (2:00AM) so don’t know if I’m doing something in my sleep that could be triggering the pain.
I’m seeing my gynaecologist in a couple of weeks so I can find out what’s going on. As I’m really needing a decent nights sleep !!
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