Can anyone give me any advice on coping with pain?!

[Henners]

To cut a long story short- I was previously one of the lucky ones who only experienced pain during period and maybe the week before. I hadn't found anyway of dulling the pain but could grit my teeth and get through it knowing it wouldn't last long. However since my last lap I have been experiencing the pain I associate with my periods everyday despite not bleeding. It has stepped up a notch and seems to have changed position slightly but it's def the same type of pain. Not only has this affected my work as rather than take a couple of days off every month I've been off for weeks, I'm scared that I'm not going t be able to make it to my upcoming exams. I think I'm also finding it hard to cope as it seems like there's no end in sight it's just day after day of pain. I really can't find the words to describe the pain but its absolutely crippling and prevents me from doing even the smallest things like standing to have a shower. I have tried mefanamic acid, cocodamol, voltarol tablets and suppositories and I'm now on tramadol. None of these seem to touch the pain they just make me sick and dizzy. Is there anything out there that can get rid of this pain and help me to lead a normal life?! I am about to start the endo diet in an attempt to calm thngs but not sure how much this can actually help in terms of pain. for context i am 23, have widespread endo, cysts and uterine fibroids. due to start hormone treatment in the next month or two. Any advice would be greatly appreciated!( sorry that wasn't short in the end!)

[lillyflower]

Hi I'm sorry to hear things have got worse since your lap I've had the same andnothing was helping. I went back to my doctors as I was struggling to deal with the constant pain along with coming to terms with what was found. I had been taking codeine but not at work as made me too dozzey so my doc sugested nortriptyline which is used for chronic pain and in a higher dose for ani depressant so I've now been taking this for over 2 weeks and still taking painkillers too but yesterday I actually only took a couple of painkillers and same so far today so I'm hoping these are now working. My doc sugested these for pain as they are not drowsey and hoped that once they started working after a week or 2 I'd be able to reduce the other pills and I'm now thinking that they're finally working and feeling hopeful. Also I felt I was in a hole not knowing how to deal with it all but I feel more like myself so the side effect of helping my mood has helped me deal with the bad days. There are other painkillers to try so ask your doctor and ask for non drowsey so you can work too. Anyway I felt exactly like you a few weeks ago and the best advice I got on here was to speak to my doctor and ask for help so I hope it helps to know how your feeling is very normal but there is light at the end of the tunnel we just have to try different things.

Other than this hotwaterbottle and hot baths are still the best relief on bad days x

[Henners in reply to lillyflower]

Hi, thanks for your reply.

It's reassuring to know that others feel the same, and I'm glad you've found something that's helping you gives me hope too! I'm planning to phone my gp tomorrow I just don't want to get my hopes up...it's always my consultant who prescribes me with pain relief but I'm not due to see him for another couple of weeks. My gp hasn't recommended anything other than ibuprofen(!!) but hopefully he will now be able to see the pain I'm in and that I've tried things before going back to him. The anti depressant aspect sounds a bit worrying- I'm really concerned about ending up relying on meds to get through things. But like you I have struggled to come to terms with my diagnosis so maybe it is something I should consider. i guess ultimately my gp will know if thats appropriate for me or not.I just really don't want this horrible illness to stop me living the life I want to!

Did you ever find out why your pain had increased after the op? I know they say things are bound to get worse with all their meddling about inside but I just can't understand why I'm getting the pain I associate with my period when nothing's happening. I know what you mean about the hot water bottle...feel like mine is a part of my body now :).

Thanks again for the advice, I feel I'm a bit more equipped to fight back if my gp recommends blimming ibuprofen again! X

[lillyflower]

Hi I felt the same when someone suggested anti depressants but I can honestly say I feel like me again rather than wanting to hide from the world and cry ! My doctor explained that these pills are used for anti depressants if you take 5 but to start on one for a few days then up to 2 or 3 if it wasn't reducing pain. I'm on 2 so very.low dose but she explained that a lot of my pain sounded like nerve pain and these pills dull the message that's sent to your brain which is why they help for pain and depression. I have noticed the pain has reduced so for that reason ill keep going for now. It's almost like there was a fog and now I can deal with things better.

As for the increased pain there's still lots to deal with other than the endo they lazered and someone suggested its a bit like being badly burnt inside so yes will feel sore for quite a while. The worst was the extra leg pains which seem to be from nerves being irratated but I just felt sore, achey and bruised inside. I have swollen tubes so as they tried putting dye through I wondered if that had irratated them more too.

I have my follow up next week so all I've been doing is trying to cope until I get more info and know exactly what's coming next. I have a lession joining ovary womb and bowl and endo and bloked tubes with hydrosalpinx so there's lots of questions as after saying what was found I was told I'd need op to remove tubes which obviously means I'd be infertile so I found dealing with all this and the constant pain was all to much to cope with.

Before my lap my doctor was rubbish sugested paracetamol and ibruprofen then codeine if bad, but my last appointment I broke down in tears and told her I was finding it all hard to deal with. She gave me a tissue and said it may not be life threatening but is life changing so I'm not suprised your struggling. She suggested naproxen first, I said no tried those didn't work so then suggested nortriptyline and she was very sympathetic and assured me if I needed help to go back and see her! This was so different to past appointments but even just talking about how I felt helped. So if your doc sugests something which you've already tried say no and I hope they can sugest something to help you. A lot of others on here are on amarityline which is the same but can make you drowsey but to be honest I was so fed up with the pain I'd have taken anything!

Good luck with doctor and let me know how you get on. X

[Henners]

That sounds encouraging I will certainly ask about that during my next appointment. It sounds like you have an awful lot going on so I'm not surprised you found it difficult to cope :(. are your friends and family supportive? i definately agree with the life changing part. i found it so difficult at the beginning as i was upset but then felt guilty as there are much worse things that you can have and i felt i shouldnt be complaining! but its just exhausting being in pain and worrying about the future.

I've had my follow up but that was before all the extra pain started so I'm wondering if my options might be different now. My consultant did mention he thought the fibroids were growing quickly so I guess that could be the source of the extra pain- I was lucky and didn't have all the evasive things that you experienced during my lap. Although that just means another op for me soon which is a pain. Do you mind me asking how you came to have the dye test? Is it something you requested? I'm glad you got through to your gp! I wasn't able to make it in to surgery but I did phone today and they have written me a prescription for codeine and naproxen. Like you I've tried these before and they haven't helped but I haven't taken them together so here's hoping that might do the trick! He suggested delaying my exams which didn't give me much hope :(. When I make it in in person I will certainly ask about the ones you've suggested.

Good luck for your follow up i hope it goes well x x

[lillyflower]

Hi I'm glad they've at least sugested something and I did have naproxen and codeine before op and did take the edge off but couldn't drive to work on codeine as felt too drowsey so kept missing tablets so if you can take all day codeine still is what I have on a bad day. I hope they help a bit until you can get to doctors if you still need to. As for my op I told them we had not had any luck conceiving in 8 years so thought maybe there was an issue. I had cyst removed years ago and was told removed part of ovary so thought maybe that one wasn't working in my head! So my gyni said as he wanted to do lap and hysteroscopy they would do dye test while I was there. I insisted I wanted answers to pain more than fertility as just thought I'd worry about that when I was feeling better and really wasn't expecting the diagnosis! So being told the main concern was my tubes aswell as endo they had confirmed I suddenly realised they ment I was infertile and still in pain! So yes I was an emotional wreck for a few days then tried to tell myself it could be worse as lady in bed opposite had hysterectomy to remove cancer. So I tried to convince myself I was ok and put a brave face on and went back to work. I gradually realised I was just faking being ok as soon as I was alone the waves of emotions came over me. So that's how I was but now new pills less pains and laying in the bath trying to keep positive and see what gyni says and no more tears....for now! I'm sure ill have another wobble at some point but am holding on till next week when ill hopefully have some answers.

As for my family they all live miles away and have had a couple of emails, but to be honest my mums reply after I told her how bad I was, was oh dear you'll be rattling with all those pills but hope you feel better soon, then.... Another 10 paragraphs about all my nieces and nephews! Yes I like to hear theyre doing well but I wish she would acknowledge the fact I may never have a child and stop rubbing in how great her grandchildren are! I'm sure she doesn't mean to but its really not helping me right now! My sister in law keeps in touch as she had lap but she has scar tissue that needs removing then will be cured so she even said she can't begin to understand how I feel but at least she tries! Ok think I've waffled on enough! Lol

How are you doing with family? I hope you have good support as its so easy to feel completely alone message me anytime if you need a chat or just need to let off steam to someone who understands x I hope the pains start easing soon for you x