Just wondered what pain meds everyone is prescribed for Endo? and advice on difficult GP?

Iv been struggling to get some pain relief latly well for last 3 months to be honest, its really getting me down, I sleep at most 4 hours a night because I just cant settle and im sure the Tramadol have something to do with it? does anyone else get this? and how have you combatted it?

Im also on Naproxen and Oxycodone 10 mg and Citalapram 20mg, Im seeing the doctor tomorrow its a new surgery and im not very happy with her at the moment, for questioning my meds all the time and she wont put me back on Prostap until the specialist has given her a long term plan with it, last one I had was in July and the pain has increased since then, I just want to go back on it...

Just interested what other people take and if your GP's are as difficult as mine?

17 Replies

  • Was on Diclofenac....but reluctantly agreed to try Naprox, because all the GPs seem to be switching their patients off it where possible, but I did so on the understanding that if it wasn't as good, I would be allowed to go back on Diclofenac despite the known risks.

    I am not yet convinced of the Naprox... it's early days yet.

    That is all I need at present, thank goodness, but have been on all manner of pain relief in the past for one thing or another.

    I had problems with sleep when I was on citalopram..and it gave me dreadful wind and upset tummy too, so I switched to Fluoxetine (Prozac) and I slept like a babe ..20-22 hours a day for weeks. It just made me sooooooo sleepy. But I really needed it by then.

    Might be worth speaking to GP about altering the anti-dep drug to see if that helps you out, rather than adding to your pain killer cocktail, because you have several different pain busters there, to use at different times to not get addicted and it is unlikely they will all be keeping you hyper and awake when all you desperately need is good quality sleep.

    Hope you find something to sort it out. It is exhausting not being able to sleep when you need to.

  • Oh wow that's interesting as iv been really suffering with painful trapped wind and upset tummy! So it sounds same, I'm reducing the citalapram anyway so I'm going to see if i can try something different i think my system has just got tolerant to the drugs in on?

    thank you for your response, from the wide awake kid? It's 3am now and can't sleep x

  • The tramadol will cause disturbed sleep patterns and can cause nightmares. I took a mixture of naproxen, tramadol and DHC. Then was commenced on amitriptyline which can be used for pain control. Nothing will take the pain away completely but you need to have a decent quality of life without being addicted to opiate based drugs. It's hard.

    You should get seen by specialist regarding the prostap, I find a lot of GPs don't know enough about it.


  • Hi i am seen by a consultant for prostap but they would only give it me for 6 months, last one was July and next appointment with consultant is in November so have had to wait a long time, consultant did ok it for me to restart prostap but my gp wants a plan in pla e before they give it me? Why they cant just give it me and then let me discuss it with consultant i have no idea?

    totally fed up, with no sleep my headaches are getting worse just wish i could sleep. X

  • Wow- I am going to sound like a junky!!

    My pain relief is:


    Mefenamic Acid. really really recommend in place of diclofenac/naproxen)




    I also have anti sickness!!

    I hope your GP does more for u! Xx

  • Hey girls...

    Just to let you know I have a great Gyne... And she has recently okayed the used of Zoladex long term provided I have add back... So currently on Zoladex three monthly and everil conti.

    She says she has about 6 patients who are on it long term and its ok... So it is possible! I have to fight for every injection at my GP but hoping that the latest letter from my consultant will help to make them happy to give me the injections. This latest one takes me up to 12 months on Zoladex.

    Good luck :-)

    As for pain relief... I take mefenamic acid religiously when I'm bleeding (find if I miss a dose I then can't get rid of the pain, but info catch it early I'm on a winner) and then dihydracodine (sp?) when it's bad... Had to fight for the codine... But it does the trick.

    The only problem with mefenamic is the stomach upset... So I take Stuff to combat that at the same time.

    Worry about you girls on anti-depressants :-(

    Xxxx hugs xxx

  • Sorry to hear the concoctions that so many are having to take but it does show how different drugs help people in different ways. I couldn't get on with Tramadol - wiped me out in a bad way and the sleep I did have was not good quality - felt worse than no sleep! Mefenemic acid did next to nothing for me - paracetamol was better - but I also wasn't good at anticipating my period so would often start taking it too late so didn't really get the benefit. I am a bit weird because codeine has virtually no effect and that has baffled the docs a bit.

    I used to get by on the max dosage (1250-1500mg) of Naproxen but as I only took it for 5-6 days a month I felt I had the rest of the month to clear it from my system until the next month, so I don't know how I would feel taking that dose longer than that i.e. every day. I also found that if I took 2 pills (500mg) the second I had a twinge of pain, then kept it "topped up" with 250mg every 4 hours (and definitely before the pain came back) I could control it. I do generally respond well to NSAID's and found less side effects that copious amounts of Ibuprofen. You can also take some strong paracetamol with NSAID's for a boost.

    I hope you get the help you need. Don't get me started on GP's and endo - the ignorance, even in the female GP's, is astounding and the notion that you just have to live with the pain makes me furious.

  • Hi lasses, I use to take diclofanic for about 15 years. Until they decided I'd been on them to long. But now I take parocetomel, dehydrocodine, pregabolin, iboprofen and dolcosate. They help the pain but dont take it away completely. I did take opiate based tablets until I had a reaction to morphine on my last op. Keep on going back to your go until they listen to you.

    Hope you get some relief soon xx

  • Hi,

    I would stop taking tramadol and switch to codeine. Tramadol is synthetic and, as my dr friend describes it, the crack cocaine of opiate painkillers. It disturbs your sleep at night and spaces you out during the day.

    Your consultant should have sent a letter to your gp outling your treatment plan. If this hasn't happened tell your GP to talk to your consultant or call them yourself. If you are having real problems with your GP you have the right to change. The NHS 2009 constitution gives every patient the right to choose who they are treated by.

    I really hope you feel better. Getting off tramadol will definitely help. You should push you gynaecologist for a plan that long term involves not having to take so many painkillers. Surgery although difficult in the short term can provide long term relief. It had really worked for me. I did take zoladex for 3 months but found it made me feel terrible. Changing your diet can help with symptoms too.

    Good luck

  • I hate Tramadol with a vengeance. It makes me feel 'sparky' at night when I am trying to sleep and doesn't dull the pain enough to compensate for it.

    Diclofenac made me feel nauseous all the time, and Oramorph made me physically sick

    We've finally settled on Pethidine. It's not ideal but I don't work so if it makes me a bit out of it during the day it doesn't matter, and I can sleep at night. And as for it being an opiate - when I am curled up in a ball of pain that's the last thing I care about.

    Sadly this disease doesn't allow us to make what society sees as the 'right' or 'wrong' choices; we just have to go with what's right for us.

  • Well in just back from the doctors and she to thinks the tramadol is the reason for my sleeplessness so I'm to reduce them and she said stick with naproxen and oxycodone.

    she has also started me on flouroxetine. To help my mood/depression and it may help me sleep, she took on board what i said about trying different meds to see what works best and also Thinks my tolerance had prevented pain relief working..

    i feel a bit better about it all today as felt she listened for first time, and at least i know there are several options to investigate, i feel surgery is not for me after several operations and the last a radical incision who h gave me 6months respite from the. Endometriosis, so ill stick to management, diet exercise and pain meds...

    the prostap worked a treat but i found the hrt ad back increased my pain so not sure if theyd give it me lo g term without hrt ill discuss it with specialist in November

    thank you for all your kind words and advice i feel this site is a godsend to me as i am alone with no family to support me its just me and my dogs xx

  • Hiya,

    Really just wanted to say I have Endo as well and its had a major negative impact on my life. I have family however I live very far away from them, I see my mum and dad maybe twice a year and while they are here visiting I just pretend I'm OK.

    I have my hubby who really is great, but my main source of comfort was my dogs! I lost them both to cancer in the last six months which I'm still not over yet.

    Its easy to say they are just pets, but to me they were not, they were not a replacement for the kids I couldn't have but exactly what my heart needed!

    The way I saw it, the way my dogs greeted me when I came home was the only genuine greeting of my whole day, they were honestly that happy to see me.

    I have no answers to the Endo but I know how it feels to adore your dogs and to believe they are the only ones who will be there for you.

    I'm sorry I've gone on so much about dogs but..please remember you are not alone and never will be xx

  • Dragonparc, I'm glad the Dr helped... I do know where you are coming from... It's horrid to suffer so much pain and not be able to get rid of it!

    I have a question for you, based on my own very recent experience... Maybe if I explain it might help?!?

    Have you tried Prostrap with no add back? I ask because I found the same with the HRT... It was actually causing the pain to come back, and after a few months, it took it upon myself to stop the add back... The pain stopped (as did the bleeding) and for the first time in ages I was pain free.

    Now, obviously, taking Zoladex with no addback is asking for Osteoporosis... So after 8 months (I forced them to give me this length of dosage so I had my life back!) I was taken off it. Within three weeks I was back to square 1 :-(

    However, last but one visit to the gyne was a real eye opener... I was reluctant to try the HRT again, but the Zoladex seemed to be my only option to get rid of the pain. So they gave me more Zoladex, and the the evoril conti patches (at half dose.. So half a patch twice a week rather than a full patch).

    In two months in and so far it's been good.. I've also had my

    Mirena removed (which I blame a lot of my pain on) but I was better even before I had that removed.

    When they removed the mirena the gyne said that if this HRT did work, "we" would just keep trying till we found one that did.

    In not saying this works for everyone, but I haven't needed pain killers (well... The odd one... But nothin like the constant filling up on them!) for a little while!

    Maybe it's worth another chat when you see your consultant? I thought HRT would just be like the pill and all would mess with my system... Maybe it's the half dose? I guess I'm still at risk of osteoporosis ... But am staying positive about that till my next Dexa scan!


  • Hi sailer girl, i was given a form of hrt cant remember what it was now, but i did find that it increased my Endo pain so i stopped taking it after only 10 days and felt much better, apart from the sweats but i can cope with them its the pain i cant cope with, so i am hoping when i see the specialist on the 4th November it will be ok to te start the prostap without any hrt or maybe like you say try it at a lower dose to see if that's better, prostap did give me a much better quality of life, I'm just a bit of a mess right now, thank you for all your replies xx

  • It's hard to worry about your bones and the future when the present is so impossible!!

    I'd try as many forms of HRT as you can until you find one that works! They're has to be one that does!

    I was diagnosed with acute depression at 17, it took over 18 months to find an anti-depressant that actually helped rather than hindered... I think drugs are different for everyone!

    Good luck and try and stay positive... A little trick I do is to do one nice thing for me, and just for me every day (maybe a short walk, soak in the bath, just basically a bit of proper pampering "me" time). Find it helps massively to keep my spirits up! And while doing it be really aware that you are making a positive effort to feel better! (But California maybe... But always keeps me from going totally crazy!)!


  • Hi all, well I'm on oxycodone 40mg twice a day also have oxynorm liquid 30mg when I need it boosting when I'm bad. Sometimes I take 200mg ibuprofen aswell. I started of on paracetamol about 9yrs ago and slowly moved up. For some reason tramadol,meflamic acid and pethidine don't touch my pain at all!! I was being admitted to hospital at times an put on a morphine pump. Oramorph kinda worked but didn't do anything when I was really bad. The oxynorm & oxycodone have really helped me. The odd thing is that they have never found my endo. I had all the tests done over the years in laparoscopy 2yrs ago and about 2mths ago my dr referred me back to gyne as I have also been trying for a baby for 9yrs with failed treatments. But also because my pain has got beyond bad. Anyway so I go see this dr who is 1 of only two endometriosis specialists in the north west and he did an internal exam which I flew of the bed I was screaming the pain was crazy!! He said I had thickening between my bowel & uterus and also he looked at the pics from my last laparoscopy he said that I had a bulky uterus and that he thinks it's inside my womb and possibly in my bowel too. He said they probably missed it because they didn't look behind my uterus. He also said he's gunna do another laparoscopy and he referred me for an MRI with iv dye to check my womb & bowels. I go for that in 12hours from now I'm so nervous it's untrue! I go back to see him on Tuesday. I also asked him about the meds I'm on and he said that is fine and that he will back me for anything I need he said that many doctors don't really understand endo much and that there isn't enough training about it with gp's. I feel really blessed to have such a good GP & endo specialist rather than just a gynaecologist. I wish you all luck xx

  • I know this is kind of off topic but I'll always remember this - years ago I had a suspected cyst rupture at home (they only diagnosed that after the fact) - I was in absolute agony and the pain was making me physically sick. It was so bad that my husband panicked and phoned my mum, who came and took one look at me and immediately called the doctor (this was in the days when doctors would come out to the house without you having to jump through millions of hoops first). The doctor arrived in the bedroom and drew up a syringe of pethidine and one of anti-emetic and within ten minutes I was asleep. It was GORGEOUS.

    Except the next day my regular GP came to see me and put me into hospital for three days because I'd been so sick for so long that I'd dehydrated myself really badly and I ended up having another lap. But that moment when something works, when the pain just goes away...

    I hope they find a cure for endo soon.

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