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Re: Long-Term Pain Management
From: Nicole (anonymous@obgyn.net)
Mon Feb 26 21:19:05 2007
Thanks for your post, I appreciate your understanding. My mom's a
lab-tech and has been the worst about my taking pain meds!...But, like
you it's the only thing that makes me functionable and you're right,
who's to judge us...WE'RE the ones having the pain. In reference to
your situation, have you tried getting another opinion...I know your
medical coverage is not that great right now...The only reason I saw
this is because endometriosis can be clear! Which means if your doctor
does not know EXACTLY what to look for than they could easily be missing
what is causing you so much pain. I know these photos are kinda
gross...but take a look at this websites below which shows all the
different types of endometriosis lesions. Also Endo pain and severety
of the disease do not exactly correlate with the amount of pain. So you
could have minimal Endometriosis and have a lot of pain, or someone with
severe Endo may not complain of any pain at all.
Laparoscopic Photos of Endometriosis:
http://www.memfert.com/lae88.htm
http://www.memfert.com/laels1991.htm
Something I did, when my doctors bill were through the roof, (and you
may qualify if you have high medical expenses)...is to look into state
sponsored medical coverage...in some states, even if you have income,
you can buy-in to a medicaid or other state plan. These plans may cover
a specialist for you. I do believe that if you haven't seen one
already...you should. Or have your pain-management doctor call your
insurance and advocate for you that you need to see a specialist...In
some cases they do make exceptions!
Good Luck...hope you have lots of pain-free days
Nicole
At Wed, 21 Feb 2007, D wrote:
>
>Hi Nicole,
>
>I'm in pain management, and it's been great for me. I started this past
>September, and it took a few months to get the meds right so finally in
>January I began to get significant relief. The difference is huge - I
>went from working maybe 2-3 days a week to working fulltime and I still
>have enough energy most evenings to make dinner. I already know this is
>going to be long, I always go on when I get started about this!
>
>My diagnosis is "chronic pelvic pain," not endometriosis, which made my
>pain doc approach my case cautiously I thought. I had a negative lap
>with my ex-OBGYN in June 2006, my only lap, but I've had numerous tests
>since then, all negative or inconclusive, and my raging endo symptoms
>just keep on in spite of that doctor's inability to find anything wrong.
>The OBGYN and my PCP (who I also fired soon after) gave up after the GI
>specialist ruled GI out as the cause of my problems. They referred me
>to the pain doctor and told me they had run out of things to do. My PCP
>said maybe I had "hypersensitive viscera," or "microscopic endo that
>can't be seen" - and if it can't be seen, it can't be removed. She was
>content to write me off as untreatable.
>
>The pain doctor started me on a lower dose duragesic patch, and slowly
>increased it, with hydrocodone for breakthrough pain. I've always kept
>pain diaries, which seemed to help build his confidence in me at the
>start. I made sure to tell him what was happening with my other
>doctors, and I kept looking for new ones who would work with me when it
>became clear that my referring doctors were not helping. I saw an endo
>specialist for a consult out of network and out of pocket, but the HMO
>won't pay for me to see him, so I'm stuck right now and pain meds are
>completely crucial to me being able to get out of bed. My pain doctor
>understands and supports the decisions I'm making about my treatment
>(including that I won't take Lupron) - I just wish he could be my PCP!
>
>About the possiblities of addiction - you got that right, addiction and
>physical dependence are quite different and pain patients are unlikely
>to become addicted to their meds. Some anti-depressants in particular
>cause difficult withdrawal syndromes and stopping them may require long
>periods of tapering down the dosages to minimize/avoid withdrawal.
>
>I also have some family members who are not completely understanding
>about the opiates. My mom was a nurse (retired 12+ years), and she's
>one of the worse - she also persists in believing I should "just have a
>hysterectomy" and that'll take care of everything. I've sent her plenty
>of info that explains why that isn't so, but she doesn't seem to read
>it. She's getting really old and I try to tell myself she's just from
>another age, but it's still annoying so I avoid discussing it with her.
>
>Basically, only the person in pain knows how bad they feel, or what
>makes them feel better. I'm incredibly happy and grateful that I've
>found medications that allow me to function! What difference does it
>make that they are "opiates"?
>
>That's my take on it - thank you!
>
>At Wed, 21 Feb 2007, Nicole wrote:
>>
>>Is anyone on any sort of long-term pain management? I've had great luck
>>with finding a wonderful doctor who has been sympathetic to the
>>Endomtriosis pain. I mean...I went 10 years undiagnosed, and couldn't
>>get an ear anywhere to hear of my pain...Anyway...for the past two years
>>I've been in pain management. I use a duragesic patch and ocasionally I
>>take a pill(opiate and/or NSAID) when the pain gets really bad. All of
>>my meds are prescribed by a doctor and I take everything as
>>directed...However, some people (friends and family members) are
>>constantly on my back because I take painkillers. I guess they see all
>>those people who OD from painkillers or get addicted to painkillers and
>>I try to tell her that that's a myth, and the reality is that that
>>majority of pain patients taking pain medication DO NOT become
>>addicted...An that addiction is different than physical dependance. I
>>also take asthma medications but I'm not an addict because I HAVE to
>>take my inhalers and my cortico-steroids because if I DON'T them than
>>effects will be horrible...I know the pain from Endo for some can be
>>debilitating. I also know pain doesn't corelate with severity of the
>>disease. And that the pain can be immense. My last biopsy said that I
>>have dense fibroidic tissue, on my uterus and ovaries and God knows
>>where else/what has developed since my last lap (I've only had
>>2)...!Anyway I'm 28 and Endometriosis has been my faithful compainion
>>since I was 15. And I know that no-one else can try and quantify my
>>pain and tell me that I shouldn't take pain meds...(especially because
>>the pain IS REALLY AWFUL) Anyway, I'm sorry this is so long...I just was
>>also wondering is anyone else has had luck with pain management and/or
>>has been criticized by other for seeking out this route, especially when
>>our other options are all so limited...I've just hate the idea of
>>putting anymore hormones into my body, I've already done 9 years of
>>different types/versions of the same thing, I just hate the idea of
>>more. Thanks all, hugs....N
>
>--
>Find an endo specialist in the ERC's EndoDocs group:
>http://groups.yahoo.com/group/EndoDocs/
>
>Try an excellent endo support group:
>http://groups.yahoo.com/group/erc/
>
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