Been too sick to write..

[Jami]

Hello to all of my friends that helped me in July....This is Jami in Depoe Bay Oregon. August and September were a haze of different doctor's appts. Got into the a Eurogynocologist. They wrote "pelvic floor dysfunction". Got into Oregon Health and Science University (the best) to a pain management specialist. She wrote, "suspected pudendal nerve damage". No doctor tends to argue with OHSU and so my doctor finally helped me with my pain. As you all know I was insane with pain and being told it was all in my head. I am now on 15mg morphine 3 times a day and upped to 3000 mg of Gabapentin (doubled) per day. I am better - living my life at about a 5 or 6 instead of an 8 or 9. I can have a day as low as 3 but most of the time the pain still occupies my mind so still not able to live a normal life. I went to a Physical Therapist in Eugene that specializes in pelvic floor problems. It helped but after two and a half hour ride home it was pretty much moot. Riding in the car that long can undo everything she accomplished. She said the muscle tightness was all on the left side and she would not even touch my rectum in the exam because of the muscle tightness. Current questions: Is anyone out there on more than 45 mg of morphine per day? They offered to put me on more but I want to know what the max dose is that anyone is living normally. I am afraid of over medicating. The 15 mg 3 times a day does not seem to effect my mind (stoned) at all. None of thes drugs are evn making me dopey. But I would love to get my pain down to a 3 type level so I can work again. Next, the doctor at OHSU suggested I have a pudendal nerve block to give a clear diagnosis. How does that work? Do you go off your meds and let the pain get bad so they can see if the pain goes away if nerves are blocked? Last thing, I have particular pain after any kind of bowel movement even if I keep it liquid. I still have oxy left, does anyone take oxy with morphine for breakthrough pain? A particularly bad bowel movement can interupt my life completely for a whole day. I am going to see a colon/rectal specialist the end of October, again in Eugene. He was very tough to get in to and I am hoping he can help me with whatever happened to me when a general surgeon did the Lateral Internal Sphintorectomy. Cutting the muscle is when the pain started and I still can't believe it was not the cause. Also I still have to deal with the fact that the laperoscopy done to try and find the problem ended up with a colon resection for a meckle diverticulum that was completely unnecessary and now that midline incision has herniated and i need to get that fixed as I now look 5 months pregnant. They never should have opened me up in the first place and now I have to do it again as my guts are hanging out, I guess. Anyway, I have missed you all and hope to count on you for more advice. Jami

[carolynm]

Jami,

Hello! I don't think we have met. My name is Cari and I have been sufffering with this since June. I know what you mean about appointments. I've had the gamit. About the nerve blocks: My pain is always with me, so I didnt' even think about having to come off meds to see if the block worked. You would have to have some level of pain going in for the injection so you will know or not. Mine was ultrasound-guided...be SURE yours will be guided either with US, CT or MRI. Otherwise they are pointless because they can't be sure they got right near the nerve. The needle goes in your buttock--I wasn't sedated and it really wasn't too bad--and if it's pudendal you will feel numb from the Lidocaine used. My numbness only lasted 20 min but other say it can last hours.

I had 1 done at the ischial spine and 1 at the junction of the ST and SS ligaments.

Also, don't let them try to do one vaginally at the ischial spine. This is not the same block used for childbirth. My oB did this and it was a waste of money after I learned that.

Good job on getting up so high on your neurontin. I'm still at 600 mg and taking it slowly. I'm hoping it will help with my pain, as the narcotics don't really touch it.
With regard to your morphine, I think you have to go by what your body is telling you. If you don't feel doped up on it, you could try to increase it to get your pain down. Not many of us here are on it, but hoping someone out there has more advice about it.
Best of luck,
cari

[Violet M]

Hi Jami,

It would be wise to check with your physician and/or pharmacist before mixing morphine with oxycontin because you don't want to suppress your central nervous system too much -- (to the coma/non-breathing state). I'm glad to hear your pain levels are down some.

It sounds like since you are still in some pain that you would not have to go off the meds before your nerve block and it could be a bad idea to quit the morphine before the block anyway because you don't want to go into withdrawal. But it would be smart to check with your doc before the blocks and follow the protocol they want you to follow regarding the medications.

Good luck.

Violet

[donstore]

Jami,
Good to see your post. I wondered how you were doing. Really glad to hear that you are making progress at cutting into your pain. I remember you saying how those small town doctors were discounting your pain. I really wanted to slap the shit out of all of them when I read your earlier posts. They are truly an evil and useless bunch of human beings. Glad to hear the big dog at OHSU brought them around. Good luck with the specialist in Eugene. As Cari said, go for the guided block to help you confirm your diagnosis. Usually you can slowly titrate your morphine up and see how you feel. Great to hear from you again. Let us know your progress.

Don

[Jami]

Hey Don...(my late husband's name)...Thanks for all of your support. You made me laugh out loud. Now remember the part about unnecessary surgery when I went in for a laproscopic scar tissue removal and woke up in ICU with a colon resection? That midline incision herniated and it hurts to laugh! Seriously, it was nice to laugh. Thanks

Violet:
They did perscribe oxy for break through pain with the morphine. Helps. Is anyone out there pain free all the time? It is bathroom time that completely does me in....sometimes for a whole day after. I fear the bathroom. I did get a kindle so time in there is a little more enjoyable! Thanks for the advice.

[helenlegs 11]

Hi Jami, Glad to know something is working for you. Great news about the PN diagnosis that was so stupidly difficult to get but will enable the treatment to be properly focused now. Well it enables you to actually get treatment!! It is so difficult to 'fight' against a wrong or disbelieving diagnosis but you have done it, good for you
Good luck with any forthcoming treatments and let us know how things go.
Helen