I have had CPP for over 7 years and they have absolutely no idea why. is there anyone else in this situation and how do you cope?

I have had 1 diag lap, and MRI, countless blood tests, Countless medicines - all the gynae related medicines such as mefanamic acid, tranecsamic acid, the pill and EVRA patches you name it I've tried it. I have absolutely no results that show anything to be a cause of my pain. I have been referred to a Pain Clinic and have tried TENS which does help a bit, Acupuncture which doesn't help at all and Im going on a BACKPACK course starting Tuesday 7th January which is a multidisciplinary approach with a physiotherapist and a psychologist. They think I have a muscular-skeletal issue. I have read a couple of guidelines for the treatment of CPP and the things I haven't tried are dry needling or the administration of anaesthetic in the muscles, myofascial release of trigger points which Id really like to look into and then if all that still doesn't work maybe a nerve block?

I am getting to the point where its become "normal" for me to sit on the floor with my knees to my chest for a few minutes every now and then to ease the pain at WORK! they barely even notice when Im groaning in pain at my desk. I don't know what to do I don't want to give up and just say "what the heck dose me up" and become like a cyborg with no idea where I am or what Im doing but I cant go on with the pain even on Gabapentin 1800mg a day. Ive even started taking Ibuprofen on top and paracetamol to try to kick the pain so I can carry on a relatively normal life but I have reflux problems and excess acid so ibuprofen will be no benefit to me in the long run at all.

What are some of your coping strategies and are there any things that you have tried which I haven't that might be of some benefit?

6 Replies

  • Hi my name is Brenda. I've had CPP for 9 years now. I'm in terrible pain all the time and in excruciating pain some of the time. I'm in the same boat because the doctors haven't got a clue. I've had several laparoscopies and many other tests to try and fnd the cause. They think it may be nerve damage. Every year I go into hospital for a 7 day ketamine infusion. This really helps for about 4 months I'm relatively pain free. It's amazing to have my life normal again until pain starts creeping back in. I've got no idea if this will help you but you never know. Anything is worth a go. There's nothing so terrible as constant pain.

  • Thank you Bee72, anything is worth a shot at this point isn't it :)

  • Out of curiosity what are you taking for the reflux?

  • I take 20-40mg daily of Omeprazole depending on how bad I is at the time

  • How long have you been on it?

    I'm curious as I have been using Lansoprazole 15mg once a day for about 15 years for reflux.

    A few days ago I found out some interesting facts about PPIs that I wasn't aware of, which I'm now exploring to satisfy my own curiosity eg. it is reported that they block the uptake of folic acid, B12, calcium and magnesium.

    So blood test today to see what my levels are.

  • Oh right ok so you take the sister drug then... I have not heard of that before. Where did you hear that? I work at an edoscopy unit so we deal with a lot of patients who have similar symptoms to us and gastric ulcers etc who all need this type of meds at least for a short amount of time. I know that in severe cases taking this kind of medication can cause jaundice and more susceptibility to stomach infections like C-diff. It would be really helpful if you could let me know what your magnesium level is after your tests if you don't mind as Magnesium is needed in he body tohelp with muscular-nerve pain... I was going to buy some supplements with it in to see if that helped.

    Thanks! Laura

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