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Back to the basics when treating pain

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  • suz z
    replied
    ...at least I have one doc who is looking at my whole body and working on a real diagnosis.
    Thanks for writing. Just stay persistent you will find what you need to get better. You are in my thoughts.

    Susie

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  • SFGirl
    replied
    Wow Suz z, that is quite a story!

    I have a similar story too. It is finally my pain doc who said, "Wait a minute, you're a 26 year old with severe chronic pain? I'm not going to just blindly treat your pain with pain killers. We need to get to the bottom of this and figure out what is going on!" He referred me to a rheumatologist who basically tossed me to the side saying that I had fibromyalgia, without comprehensive testing to rule other things out!!

    I finally found a rheumatologist on my own and now she is trying to piece things together. We still don't know what's going on. But at least I have one doc who is looking at my whole body and working on a real diagnosis.

    I really hope you will be able to get this figured out.

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  • suz z
    replied
    Back to the basics when treating pain

    Originally posted by icnmgrjill View Post
    What makes pelvic pain tricky and frustrating, however, is that there are several potential sources of pain. It could be, perhaps, from wounds in the the bladder wall, often characterized by pain which gets worse as the bladder fills with urine that is relieved upon urination. It could be from the tight, spasming pelvic floor muscles, often represented by difficulty starting the urine stream, or a steady, achy burning pain often focused in the vagina. Or it could be from the nerves, strongly suggested when patients have positional symptoms. Patients with a pudendal nerve entrapment often have symptoms when they sit down.
    Dear Jill, I agree wholeheartedly and thanks for this reminder.

    As medical knowledge has grown, physicians have separated into narrow channels of treatment specialties without much overlap. Doctors should at least talk to each other, which they don't seem to do any more.

    When I started having pelvic pain and went to my GYN (in 1997) she didn't know what was wrong. After 2 unfriendly and dismissive urologists I was diagnosed with IC. What was ignored at that time was my complaints about gastric problems ("I only do bladders - see a gastroenterologist.").

    I went to a gastro. He said I had irritable bowel, which he considered a "waste-basket" diagnosis, meaning that it was what he considered to be an untreatable, psychologically induced condition. What he missed were other complaints about lower back pain and sitting pain. Vuvlvodynia was not even discussed, as he didn't ask and I didn't volunteer information about that. He also missed severe diverticulosis which a year later caused a spontaneous rupture of my colon requiring major surgery.

    Then I went to a pelvic floor dysfunction PT who did biofeedback to strengthen the relaxation response for bladder emptying. That was, of course, her expertise.

    Fast forward to a few years later. My IC was "in remission" most of the time and I can start the urine flow without pushing thanks to the pelvic floor PT. However, lower back and sitting pain had increased to the point that I couldn't stand it.

    My primary care doc sent me to an ortho, a neurologist and a rhematologist none of whom found any significant problems. They all missed Ehlers Danlos which is a connective tissue disorder that probably caused the colon rupture. (The rheum should have suspected this but she just told me to get into a web self-help group for hypermobile people. The ED was eventually diagnosed by a clinical geneticist. Because I am very hypermobile (a former dancer) my ortho problems didn't seem significant because I wasn't stiff. I could move fine. It is when I sit or lie on my back that I have pain.

    So, pain management and pain meds for 8 years so far. Injections at different levels of the spine, including pudendal area looking for nerve entrapment, RF nerve ablations and finally a hip replacement. A psychiatrist who offered ECT. No way!!!!

    Still the sacral /coccyx sitting pain persists.

    My pain doc and I are now revisiting the whole problem. Starting again. I will go back to a GYN and talk about the vulvodynia. I will go to another ortho. I will have the pelvic floor re-assessed. I will consider having the other hip replaced if necessary.

    Is there ONE doctor who can put all this together? I am not saying that there is one diagnosis that will answer all the symptoms, but I do feel that they are related in some way and even if they are not, do I have to live the rest of my life with pain meds instead of having my "tooth fixed?"

    The only thing I have found is that the Pelvic Floor dept at Johns Hopkins has a team approach to address most of these issues at the same time. I will ask for a referral for an appointment there.

    All the best,
    Susie

    Leave a comment:


  • flowerangela
    replied
    i agree this post is fantastico thanks jill

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  • SFGirl
    replied
    Thank you for this fantastic post!

    You are right, find the source of the pain is critical, but very difficult as pelvic pain can be complicated.

    Leave a comment:


  • icnmgrjill
    started a topic Back to the basics when treating pain

    Back to the basics when treating pain

    I just got off the phone with a lovely women back east who reinforced a critical concept of pain care: To treat pain effectively, you should treat and, ideally, resolve the source of the pain.

    If your pain is coming from a bad tooth, wouldn't you go to the dentist get the cavity filled rather than just take medication for years?

    If your pain was coming from a broken leg, wouldn't you want to get the bones aligned and set so that they could heal properly?


    Yet, when it comes to pelvic pain, it's far easier to avoid the source, avoid your doctors and go straight to an easy, though short term fix, pain medication. Hey, I'm not against the use of pain medication at all. I think pain needs to be treated aggressively and compassionately and that part of that treatment should be focusing on and, ideally, resolving the source of the pain.

    What makes pelvic pain tricky and frustrating, however, is that there are several potential sources of pain. It could be, perhaps, from wounds in the the bladder wall, often characterized by pain which gets worse as the bladder fills with urine that is relieved upon urination. It could be from the tight, spasming pelvic floor muscles, often represented by difficulty starting the urine stream, or a steady, achy burning pain often focused in the vagina. Or it could be from the nerves, strongly suggested when patients have positional symptoms. Patients with a pudendal nerve entrapment often have symptoms when they sit down.

    If you've been taking pain medications for years, perhaps its time to reassess the source of the pain. Here are a few suggestions that I think could help.

    - Have a pelvic floor assessment to determine if your pelvic floor could be part of the problem.

    - Consider having the doctor take another look at your bladder to determine if Hunner's Ulcers could be a part of the problem and, if present, have them treated with a hunner's ulcer therapy such as fulguration, laser therapy or triamcinolone injections.

    - Are your symptoms positional?? Do they have an electrical or searing quality to them?? Are they shooting down a leg?? Pay close attention to your symptoms and how they may vary throughout the day and share this information with your doctor.


    After having severe and untreated IC pain the first year of my diagnosis, I believe that denying treatment for pain is cruel. Patients absolutely need pain care but we also have to focus on treating the cause of pain.

    If your pain hasn't improved, revisit the diagnosis and ask your doctor "Could we have missed something?"

    Jill
    Last edited by icnmgrjill; 05-24-2011, 03:19 PM.
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