No announcement yet.

Give Testimony to IOM on pain care!!! Just five minutes!

  • Filter
  • Time
  • Show
Clear All
new posts

  • Give Testimony to IOM on pain care!!! Just five minutes!

    From the National Vulvodynia Association -

    The Institute of Medicine, charged by the Secretary of Health and Human Services to conduct a consensus study of our country's current state of pain research, medical management and education, is seeking comments from chronic pain sufferers and medical professionals who treat chronic pain disorders pertaining to:

    (1) Barriers to medical care;
    (2) Opportunities to improve pain care; and
    (3) Groups that may not be adequately treated for pain.

    We encourage you to submit a public statement by March 31st at: When doing so, please be sure to name the specific pain disorder(s), e.g., vulvodynia, that you suffer from and briefly summarize its impact on your health and quality of life.

    If you live in Alabama, California, Connecticut, Maryland, Massachusetts, Michigan, Missouri, Nebraska, New York, North Carolina, Oregon, Pennsylvania or Washington, and you are willing to share your story and/or public comment with your local newspaper, please send an email to [email protected].

    This is what I wrote -

    I chaired a CA State pain conference several years ago. We saw several key barriers.

    #1 - The perception by medical care providers that if they prescribed pain medication, they would be subject to invasive scrutiny and investigation by the DEA/BNE due to what they interpreted as overzealous enforcement by various state attorney generals.

    #2 - The mistaken impression by medical care providers that patients prescribed pain medication would become addicts when, clearly, research shows that this rarely occurs.

    #3 - The mistaken impression by physicians that chronic pain conditions do not merit aggressive pain care because it is not life threatening or cancer based.

    #4 - The mistaken impression that children can not or do not experience pain levels to the degree that they would require care.

    #5 - That pelvic or bladder pain conditions do not evoke severe pain requiring aggressive pain care despite studies which demonstrate that the pain is equal to cancer pain on the McGill pain scale.

    #6 - That few specialists in pain care and/or management appear to survive and thrive, particularly in rural areas.

    #7 - That some pain management clinics and/or centers are actually detox centers with the goal of getting patients off of all pain medication rather than treating pain comprehensively. Patients are often reluctant to receive care in these facilities out of fear of being denied all pain care.

    #8. Most importantly, the lack of local or regional physician education opportunities that address and resolve their concerns about the above issues.

    Thank you!
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.

  • #2

    I was just searching and reading the forum to update myself on helping my daughter cope with these problems and came across your article on pain care.

    My daughters primary doctor called her yesterday and told her to be on the look out for a fax from him on "pain management specialists". To help her detox and get off the medication.

    He has stated that he "will get in trouble for prescribing to her the pain opiates medicines" .

    I will be printing out your list and sending it to this doctor.

    Now, she is also looking for another primary in the Marin or SF area who can help her handle her drugs and pain care.

    We will also write and submit a public statement regarding this treatment.

    Thanks for your help.


    • #3
      Once again, this stuff turns my stomach. People who NEED pain meds for PAIN rarely get addicted. It works as it should. Thank you Jill, unfortunately we are left out again in Maine for this, but we always educate our NP about this stuff and will pass it on to him. If Bob did not have meds for pain, I'm afraid he would give up. There is too much stigma attached to pain meds. If you don't have cancer, well gee whiz, why do you need it? Jill, wife of Bob


      • #4
        I filled out the form, Jill. I think the treatment of pain is disgusting. Why don't these doctors realize that the depression and hopelessness one feels when dealing with severe pain is worse than using pain meds for a time. I was in tears begging my primary for some Vicodin because my urologist would not prescribe for me even though I had appropriately used these meds on and off for years in the 1990's. I felt so betrayed and abandoned I never got addicted...i don't really like the way narcotics feel. I also took ultram for a while and they seemed okay about prescribing that, but I did feel slightly addicted-but had no trouble weaning off. I think it's a case by case situation.


        • #5
          Thank You

          Thank you for sharing this opportunity with us. I participated and hope it helps.
          Tried Elmiron, Elavil, Atarax, Botox...with no success and/or adverse reactions.

          Current: self administered bladder installations (down to 2x a day per dr advice), Lamictal, Lexapro, Lorazepam, Zyrtec occasionally, Prelief, Tramadol, Oxycodone, Trimethoprim at bedtime, Gabapentin, Omeprazole, Flector patch, Tens Unit, warm baths, other forms of heat therapy, IC diet, Gluten/Wheat free diet, vitamins and Premarin because of hysterectomy and osteoporosis.

          Have difficulty getting pain under control from IC and other health issues. I've pretty much accepted it as part of my life.

          I am thankful for supportive family and friends. Not everyone is supportive all of the time, but I am so thankful for the support I do receive.

          I pray for healing for all and for a cure.