Poor pain management for ongoing lower left pelvic pain

I have been having everlasting bouts of excruciating lower left pelvic pain and since i have been looked after by a geleral surgical team for 4 years thought that right phone their secretary and ask to bring forward my next checkup appointment and explained that i was having bouts of severe lower left pain around the site of my pej feeding tube.

Got an emergancy appointment for a week's time. When i got there i was in a bad place as regards with my pain. On a scale of 1 to 10 i explained to the surgeon that the pain level was on par with a 9 out of 10!

I explained that to help control the pain levels i was taking 2 paracetamol along with 4 codeine tablets (GP 's recomendation) up to 7 times in any 24hr period of time and that i was scared of the damage that i was doing to both my liver and kidneys. The consultant admitted me there and then. Firstly i was attached to a drip so that i could have an antidote for all the paracetamol that i had been swallowing for the pain. Over the next 2 and half weeks i underwent several tests to determine what was causing my pain and where exactly where the pain was. As i have previously said i use a pej feeding tube overnight due to a severe malabsorbtion problem that i have been experiencing for 6 years. At one time my weight had plummeted down from 57.5kilos down to 41 kilos. I was then told that i would be using a pej for life!

I digress from the main reason that i am posting on this group but as this is my first post i felt that i had to explain a few things so that anyone reading my post would understand my problems with pain.

Anyway the upshot of all the various investigations were that during my last pej tube change last January they managed to damage a nerve or two in the process of putting in a new pej which needs to be replaced every 3 to 4 years. So the pain started to appear about 2 months after the pej tube change but is now so very debilittating that i have to rely on pain relief to get me through every day and night.

While in hospital the pain management team managed to get my pain under control by prescribing Lidocaine patches 12 hours on and then another 12 hours off. Also Pregabolin hard capsules every 12 hours and lastly Morphine, 5ml every 2 hours while pain lasts. All this was fine when i did not move around a lot while i was in hospital but is proving much less effectively now that i am now home. I was discharged with enough Lidocaine patches to last 3 weeks, enough Pregabolin to last again 3 weeks and lastly a 100ml bottle of Oral Morphine. Now the list of medication that i was discharged on from the hospital says that the GP is not to prescribe any more Morphine to me when this 100mls bottle that the hospital gave me runs out! Now when i use the Lidocaine patches, the pain relief becomes ineffective after 8 hours into the 12 hours that i am wearing it. The Pregabalin looses it's effectivness after 6 hours out of 12 hours in between each dose and finally the Morphine needs to be taken every 2 hours day and night to be of any use. Yes i have been reffered to my local team of pain management but how long i will have to wait for an appointment to see them is another matter. Meanwhile the effectivness of the 3 various pain relief tablets, liquid and patches is getting smaller and smaller and the pain once again is getting worse and worse. The 100mls of Morphine is already nearly empty and ok i understand that Morphine is addictive but when you need it to try to keep your pain under some control it is important to be able to get more supplies from your GP when your need more isn't it? So on Monday morning i will have to phone my GP's practice to make an emergancy appointment to try and explain to my GP that i need more Morphine until i get my appointment with my local pain management team!

Can anything other than multiple options for pain relief be done to repair the trapped nerve that was damaged when i had my last pej tube changed? Yes resiting my pej tube is still an option but the powers that be are keen for me to soldier on using my present pej tube! If only that they could see how this pain is affecting my quality of life they maybe they will be more sympathetic to at least the idea of resiting the pej feeding tube. Anyway that is what i am facing right now and if anyone reading this could give me any ideas as to what my options are from now on then i will read each and every one. Thank you in advance for any sympathetic answers.

1 Reply

  • You came to the right site. I just joined not too long ago and this site continues to get me through my journey through pelvic pain a very serious journey.

    You are not alone and it seems everyone here gets it a few times over.

    I hope you can take comfort in knowing reaching out you have come to the right place. Keep reaching out to the pain centers, or any organzations however unrelated that might lead somewherr, book authors whomeever you find however unrelated That is how I found my practitioner who was a needle in a haystack.

    I am in the US. I started my journey after 32 doctors which started with medical damage. I have journeyed pain meds. My life changed for the better when I found the right phsyio and (it could take many) Trigger point release in tandum with Acupuncture has been life changing. Inclusive:, yoga, salt water pools, hot tubs, ice packs, meditation, tens units, cold lazer therapy and simultaneously support around me of positive thought. Also, simultaneously constantly understanding of the pain meds.

    Gabapentin ive been to the heights and as I healed through trigger point release and acupuncture I could bring my gabapentin down. Vaginal valium. And oral Valium, Clonopin great muscle relaxers and great to get through painful treatments. These recommended by my doctor. Great helps.

    Wine! Gin and tonic.

    Traumeel creams, t relief, magnesium have all helped.

    Big drugs there all there for the days beyond.

    Keep a journal to discover trends. Try to find what is the focal points of the pain versus where the pain has spread.

    Also journal where there is any improvements.

    Not sure, but the physios seem much safer and much much more knowledgeable.

    Keep the hope, one day at a time.

You may also like...