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Re: Long-Term Pain Management
From: Jenny (anonymous@obgyn.net)
Sun Feb 25 07:56:14 2007
Hmmm...yes, the sad thing about people judging is that they are not
living in our shoes and are viewing things through a filter made from
their own experiences. If the people judging us were faced with the
options of either hormones, surgery over and over again that often just
scars and doesn't provide relief, or having a hysterectomy which often
doesn't provide relief just more problems, I actually think many
drug-fearing people would opt to manage pain through a controlled
program of pain medication. Especially when they realize that the pain
interferes with sleep, family life and planning, sex with your partner,
your entire well being, oh yeah, and your ability to work because it
isn't recognized as a diability in the United States.
I have started seeing a pain specialist who is very educated on the
subject of endo. He took me more seriously than anyone I have ever
dealt with in the Medical community. He is approaching the problem from
several directions. He is having me do an MRI just to make sure that
there isn't something extra in that area giving me problems. He is
having me go to physical therapy and I am a little nervous because th PT
will be working some trans-vaginally to hit pressure points inside. :0
He said that chronic pelvic pain can cause the muscles to litterally
knot up like knots you get in your shoulders. Also we are going to try
some shots to block the pain. And he is having me see a psychiatrist to
help me deal with the issues of chronic pain. All the while keeping me
comfortable with pain meds (I must visit the office once a month for
refills).
Good luck to you ~Jenny
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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