Help with managing pain and day to day life? :(

[Nikid1991]

Hi I've recently been diagnosed with Endometriosis and am waiting for an appointment in March.... I've been put on the contraceptive pill that stops your periods. I've been asked to get a coil but to be honest I don't want it. One of my close friends has endo and shes had the surgery to get tissue removed and had the coil and she said it still didn't help.

This has taken over my whole life, I've been signed off for the past 2 weeks but I'm going back into work Monday..

I had a really bad attack of pains a few days ago.. I couldn't sit down and if I did it was at an angle and I'd get uncomfortable at stand back up.. didn't sleep for a few days because it seems to get so bad at night for me.

Just curious if anyone can help with what pain relief worked for you, I suffer badly with my bladder and urethra pain, and just general pulling sensation which sometimes stops me from walking, and even if I can walk its not far or fast.

Literally feel trapped in my body.. I'm such a bubbly outgoing person but this has taken over my life.. my mental health has got bad. I'm happy I've found this page because some of the posts are exactly the pains I've been having.

Just would like some advice and help with living with being in pain all the time

Xxx

[hurtinginside]

I am so sorry Could you speak to your GP about counselling? For pain managment, painkillers help. So do heat/cold pads, hot water bottles. Theres a machine called the tens machine which could help.

[Nikid1991 in reply to hurtinginside]

Hi! My gp has given me codeine, I've already got a repeat prescription of naproxen and pregablin. But nothing takes the pain away and I don't wanna just keep eating tablets like sweets.. because my liver and kidneys don't function properly either. So I've got to go to a liver specialist in April aswell

I use hot water bottles all the time I even got one that's like a travel one I have to take everywhere just incase I need it

I know the NHS is stretched at the moment so I'm just waiting

[Jane884]

Hi there, really sorry to hear your suffering so much. I'm completely with you, endo has taken over my life too. I have bladder endo and experience the pain and pulling when walking like you, it's miserable, isn't it? You may already know all this, but I'll offer my limited insight!

Make sure you're getting some decent pain medication prescribed. They're not exatly quick in offering it are they?! I had to jump through hoops for anything decent before I had a diagnosis, but you have one now, so they can't deny you if your pain is debilitating. As you may have heard, the best pain killers for endo are supposed to be anti-inflammatory (NSAIDs), like ibuprofen, but you can get stronger ones from your GP like naproxen. They did help with my pain, but unfortunately I can't take any NSAIDs as they give me horrendous stomach pain, thanks life! I am currently taking the max dose of paracetamol and then add in codeine where necessary. I've been prescribed 30mg codeine phosphate up to 4 X a day, but I often take 60mg when I'm bad and make up for it when I'm not. I always still have pain though, but it definitely helps and the Codeine helps with sleep.

I also use hot water bottles, and find that those stick on heat pads, right above my pubic bone for when I'm on the move, offer a lot of relief (Poundland seems to always have them, and they're the cheapest I've found). Weed helps too, for pain, mood and sleep, if that's something you'd consider x

[Nikid1991 in reply to Jane884]

Hi! Yeah uou sound exactly like me! I'm not always always take ibuprofen either because of my kidneys, and where I keep failing liver function tests my gp is reluctant to give me anything. Luckily enough I have the nalroxen on repeat for a back problem I have.. I'm a paint sprayer by trade, and as I'm so petite I get alot of back and shoulder pain when I'm busy at work.

I've felt alone for so long with this, wven my friends that have it they don't have it the same as me and thus page is really helpful to not make me feel so alone.

Yeah I smoke weed which helps especially with my night episodes. My friend is trying to get me some cbd oil.. at this point I'm.more than happy to try anything.

Thanks for replying xxx

[Pinklady83]

This is all the same for me! I’m currently laid on the sofa now curled up into a ball with my hot water bottle in my tummy and back! Had my bedtime joint and had to take my oral morphine but like you I’m at my wits end with this pain I was in hospital in December for two nights because I just couldn’t do the pain any more at home! The mini pill has reduced my blood loss a bit but done nothing for my pain been nearly 6 months in it now! Just waiting for my first gynaecology appointment to come through! X

[Tillyfloss]

Hi. Just to add to others ideas, getting meds right is an art form with endo and for me took ages to find the combination that gave me the most better bearable days - the pain clinic were a massive part of getting this right and much better than my go. I also have bladder issues and I find certain things triggers pain like fresh orange juice, I’m also worse with any type of pasta and a few other things ( I did the endo diet which really helped work out what was triggering pain). Push with every appointment, I know it’s hard and you feel rubbish and you start to believe it’s all in your head but when you find that doctor that takes you seriously it’s worth it and after years of pain and getting no where I got diagnosed and operated on and these days I barely take a paracetamol let alone the 29 pills a day I needed to just get up. Good luck and remember you deserve not to be in pain and get the help you need. Xx

[EmB18]

I also have endo and bladder involvement and it completely took over my life too until I got it more under control. I found a combination of nutritional therapy and homeopathy made a big difference to my symptoms. We all respond to things differently so it might be worth keeping a food diary but I found caffeine, alcohol and anything acidic like orange juice made my bladder worse. Taking out wheat and sugar and having a more anti-inflammatory diet also helped with the endo pain.