Anyone else in pain all the time ?

[Catcat]

Hi everyone I seem to have pain all the time with no pattern I'm on norethisterone all the time so no periods but am in pain daily some days a worse than others , I get lower abdo pain , back pain and upper abdominal pain on my left side plus usual sex related agony ,and really tired , I'm going for hysterectomy but been told 5 month waiting time so fed up I was originally referred back to gynae last April so will have waited a year by the time it's sorted due to nhs incompetence in one way or another ! I don't know if i can put up with this till apr and I have been off work a month already and signed off till after Xmas !!

[shorty123]

Hi, Sorry to hear you are always in pain and yes i am too. Mine is mostly lower abdominal pain and down my thighs at the front. Sometimes some back pain and as you say the after effects of sex. I've done food diaries, pain charts etc but dosen't seem to follow any kind of pattern. Its now usually worse in the mornings though because i think if i've been lucky enough to grab some sleep in the early hours then i miss out on taking pain killer so wake up in terrible pain. I mostly take Tramodol which does help alot except you need to catch the pain early otherwise it can take ages to take effect or sometimes not at all. I have my next scan next week but am now seriously considering paying privately. Its money that i've saved for a special holiday but like you don't know how much longer i can stand this. Its been about 4 years now and totally worn out from both the pain and no sleep. It also wears you out just trying to appear happy and in control when you most definately are not, especially when at work.

Maybe you will have some luck and it will come earlier than 5 months. If not then i guess you just have to take each day as it comes and do whatever works best for you pain wise. Heat is my best friend and being able to just shut myself away from everything and everyone when i need to most. Hopefully you have some understanding family and friends. It helps being able to come on this site and vent your mood as however understanding those around you are if you are like me i am consious that i even bore myself with it sometimes.

Take care xx

[missee in reply to shorty123]

everything you said there i can understand...u made my day actually to read about you...im not the only one...i also am on tramdol and strong anti inflamatorys and noristerone....some days are ok..i can cope...somedayslike u..heat and hiding..the worse comment that ive heard over and over again is are you feeling better now??...and my answer is always the same...im getting on with it...my freinds and partner and fam are very good...i do wonder like you though if i bore them as much as i boremy self some days...

[Hidden]

I am sorry to hear you are in so much pain. Sad that you have a bad experience with NHS. I have nothing but praise for mine. I had a long wait and had a lit of complications during lap which left me critically ill and required another op 2 hours later to save my life. 2 ops on others were cancelled as a result. I have had the best care after and am still in very regular contact with the hospital.

Really hope you are pain free after the op.

[missteal]

Oh hun, I could've written that post about myself. I'm in constant pain, not as bad as before I started the norethisterone but still pain all the time, Whether its my pelvis, my back or my hips, its always somewhere or everywhere. I'm exhausted constantly, barely sleep and sex leaves me in pain for 2 days damn you adeno taking my favourite thing away from me!! - sleep ;P

I've been referred to a cognitive behavioural therapist and a pain management team and am waiting for an appointment from both. I've been told they won' give me a hysterectomy for at least ten years so I need to learn to live with this pain (I'm only 28). I've been given the possible diagnosis of adeno as they found no regrowth of my endo in my last lap (luckily I know).

My thought are with you hun and if you need to chat then feel free to pm me xxx

[Juleyanne]

Interesting comment Shorty123. I too find I am constantly trying to get the pain medication exactly right and juggle between codeine's constipating effects and taking stool softeners and anti spasmodics. I too virtually every single night find I wake in pain as the effects of painkillers wear out during the night and often I am in so much pain by the time I am woken by it, I am exhausted and can barely reach out and grab more pain relief from bedside table and have to wait until it kicks in to carry on sleeping! I was given Tramadol as an experiment but have been nervous to take it yet as I also take sleep tabs and was scared it would knock me for six with both but maybe I'll give it a go. The Gp said she was reluctant to move me into a whole different method of pain control but didn't tell me why, so I was suspicious! The pain during the night often burns intensely and I find I just have to get up and go to the loo a few times as bladder pain gets so overwhelming. Does anyone else get this and find any particular pain killer facilitate more sleep? I was only given two Tramadol to try so any info re this its effects would be good. I hope Catcat, you get some answers to this nasty constant pain. My one bit of advice would be try and make sure that your hysterectomy is performed by an endo/adhesion specialist gyne. They need to get the endo lesions out completely and any adhesions when they do the hysterectomy and sometimes need a bowel surgeon present.

[Chrissie66 in reply to Juleyanne]

I personally hate Tramadol, but I know a lot of people swear by it. It makes me go all fuzzy headed and 'jumpy' - you know sometimes when you're just drifting off to sleep and you suddenly jump awake? I'm doing that all time during the day, and it makes sleeping really hard It also makes me feel quite sick and to be honest doesn't do much for the pain. But as always, everybody is different; Tramadol just isn't for me.

The only thing that kills my pain at all is pethidine. My GP hates giving it to me because it's old fashioned but moreover because it's such a dangerous drug in terms of addiction, and I have to jump through hoops every time we discuss it - but I tried morphine, which is exactly the same in terms of potency and potential for addiction, and it made me really really sick. Also I've been on antidepressants and diazepam for years for anxiety and depression and I think I would be 'taking advantage' of those if I was going to abuse anything.

A while ago on here somebody mentioned Palexia, has anybody had any experience with that? It's quite a new drug, so new in fact that when I asked about it the GP who is so reluctant to give me pethidine wouldn't prescribe it because she didn't know anything about it....

[lm330]

i know how you feel hun I have already of that and i dont get paid sick leave so its pretty tough to take time off work. im continually struggling to meet my boss' targets as im exhausted and in pain like you. hope that the op makes things better for you . take care xx

[ilovemykids]

Juleyanne My symptoms sounds like yours constantly burning when I wee, I have this feeling all the time together with the pulling of my left side when I get into bed. Pelvic pain more on the left side and a heavyness when I stand in the lady bits ( sorry tmi) always hurts more when I try to do simple things or stand up for long periods. Thighs ache but seems far worst when I am in bed.I'm too on sick leave and i'm awaiting an appointment on the 10th, I'm hoping another lap will ease this pain, I know it's endo again due the some of the same symptoms but this time i feel it has invaded my bladder. I'm on naproxen which dont work, tried ibuprofen no use, allergy to codine, tramadol makes me feel vey nervous and all over the place, oramorth does work for me but I'm very reluctant to use this due to constipation and addiction, I only use this when the pain is at it's worse and I cant bare it anymore. My pain is different every day, the two things that stays no matter what are the burning and total exhaustion.

Catcat all we can do is take each day at a time, have you tried to hurry up the appontment I kept mivering my GP everyday for a week untill I was refered to where I wanted to be refered to, I know the receptionists were sick to death of me but I just kept it up untill they gave in and gave me what I wanted. Years ago I wouldn't say anything and just went a long with what any doctor told me thinking they know best but after years of experience and knowing that not all doctors actually know what's best and that I know my body better than anyone, I speak my mind more these day's.

Hope everyone has a nice Christmas and are painfree x x x

[Lillil]

Hi, am awaiting to see if I have endo, but have same pains as you all and am a nurse so know about pain relief.

I am getting a tens machine for Xmas as I'm running out of options and hate taking pain killers all time.

It really is worth seeing a pain specialist as timing of taking drugs and drugs to counteract drugs can make you feel like you have a new life.

Also amytriptaline - not sure how you spell it! Is good for nerve pain and you could ask for fentanyl patches which is a slow release opiat you change every 72 hours...they also have lozenges same drug for break through pain.

Having an anti-sickness drug can help when taking opiates and also try taking a long acting drug at midnight not ten pm so you at least get six hours sleep.

Some people react better taking drugs at same time and others spacing it through day so you take something every couple of hours which I know is a pain.

I wouldn't be without my heated bean bags...I use three to get in all areas!

Also I find with all the pelvic, hip, back pain it makes my back really tense and awful so maybe if you can afford it a few osteopath sessions to realign things or some massage therapy once a week.

Wish someone could take our pain away for us but together we will find some solutions!

Good luck and sorry am sure you have prob tried most things, but all I know to helpxxx

[Lillil]

Also have you looked at radical excision instead of hysterectomy...seems to be the buzz we all need to hear aboutxxx

[OosengaoO]

Hi catcat,

even though your not having a period your body still gets ready for that time of the month, I had my ovaries shut down for 6 month and I felt no different pain wise. Can you contact your surgeons secretary and ask to be put on the cancellation list and also the short notice waiting list, might get you seen to before April. I always go onto those lists and so far I've never had to wait longer than 6 weeks.

Hope you get sorted soon

Senga x

[OosengaoO]

Radical excision might help but as every female on here knows everybody is different. I has radical excision and all it did was make it worse. My Endo grew back in a different area. Any decent surgeon will tell you when you disturb Endo there's a big chance it could form somewhere else. Id have a hysterectomy tomorrow if they would let me, but im 35 no kids so they won't do it even though my chances of getting pregnant are 1% I do have severe Endo though to the point I lost an organ due to it.

[jozey82]

this sounds exactly like me, i am 30 years old and have suffered endo for about 8 years now. my gyne has tried every pill inc the implant, which made me so aggressive so she took it out, the injections, which put loads of weight on and didnt do anything for the pain, had the marina coil fitted and it made my pains 10 x worse i couldnt get out of bed and after 4 months of constant naggin they finally agreed to take it.

i am like u in constant pain all the time, and when it kicks in on the left side it feels like i have a broken rib cause it hurts wen i breathe as well.

I am currently booked in for a hystrectomy in jan afetr 2 years of constant going bk and forth to the dr and arguing with them. just keep naggin them hun, they will eventually listen, ring the hospital and tell them how bad u are and that u cnt cope anymore and ask if they will put on for any cancellation appointment.

good luck xx

[Amb43]

Hi, I am undiagnosed, have gynae appointment this Thursday, have all the symptoms, and more, of endo, convinced that's what it is (my mother had it).

I too have pain ALL the time, I have had it every day now for almost 3 months, despite Co-codamol, buscopan, tramadol and voltoral suppositories. I have spread them out throughout the day and night (set an alarm) so there is never a gap where they wear off before it's time for something else.

Not sure how much more I can take, I can't stand, sit, or lay down for long, and just dreading the gynae will send me away with pills I've read so many stories of it taking years to get diagnosed, don't know if I can handle that, like so many of you seem to have done, bless your hearts.

[Amb43]

Juleyanne and Chrissie66 .... I personally don't have horrible drowsy effects from Tramadol, (amitriptylene I had before made me really rough), but I do get those "jumps" you mention, happened to me for the first time the other night, was laying peacefully and then "jumped" but the worst thing was the "jump" seemed to stem from my lower back, where most of my pain is, I wondered what the hell was going on and panicked for a little while.

As you say, different people react differently to the same drug.

Hope everyone is as painfree as possible xx

[Chibby]

I know this sounds awful, but I think I could deal with the pain if it was only round my periods. I have pain like yourself everyday, its so frustrating I've been like this for 2 years now and am like yourself waiting on a hysterectomy. It sometimes feel like a life sentence hanging roung your neck...

[Juleyanne]

Really interesting blogs here. A subject not talked enough about! Hopefully, those in 'high' places are reading these comments, it really sums up what many of us are trying and often failing to cope with on a day to day basis - uncontrolled pain! There seems to be no magic pill just a

a conveyor belt of try this, try that and usually ending up back on the operating table for a radical operation that might or might not improve it and may or may not make it even worse due to adhesions! Any wonder many of us tirelessly search for an answer that often isn't there and end up depressed, in pain and having to rely (thankfully) on the support of fellow sufferers as it often seems that the rest of the world has it's hands over it's ears to the plight of Endo and Adhesions sufferers!

[linnyloo63]

in pain all the time some days worse than others been to pain management where you talk about your pain take tramadol if the pain is too bad doesn't take away all the pain just relaxes me this is a misunderstood illness because you can't see it my thoughts are with all fellow sufferers

[batman80]

gyno's should do their research here they should learn alot from us ladies x