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Re: Pain med Question (with rant!)
From: Alyson (anonymous@obgyn.net)
Tue Apr 10 09:54:12 2007
I completely agree. I've repeatedly asked for pain meds and get nothing
more than darvocet and/or ultracet. I've taken to hording the few that
I get. The darvocet works sometimes, but not at all on the really bad
days. I've also repeatedly asked my pcp for a referral to a pain
management clinic. Here is where I get ticked. I recognize the
hesitancy to prescribe pain meds given the current culture of addiction
persecution. However, my pcp won't even refer me to a pain management
specialist because "They'll just put you on heavy duty pain killers, and
your too young to get started with that". Now the last time I checked,
I am an intelligent 30 year old woman with two confirmed chronic pain
conditions. Is it not my right to see the specialist, listen to the
advice, and make ***my own decision*** about my treatment options?
That, I think, is beyond ridiculous. Thanks for letting me vent on that
one!!
Alyson
At Mon, 9 Apr 2007, D wrote:
>
>Hi Tracey -
>
>I'm really sorry to hear your doctor is not adequately treating your
>pain. I don't know what percentage of women with endo need pain meds,
>or how many of them do get adequate treatment for their pain, but from
>what I see on different support groups online I'd say that most women
>who have chronic pain from endo have trouble getting the meds (and the
>surgery) they need. I see a lot of posts from women whose doctors won't
>give them anything more than darvocet - which I can tell you wouldn't
>begin to touch the pain I have! I'm on a fentanyl skin patch and still
>take norco and morphine for the breakthough pain. It sounds like a lot,
>but you adjust to it quickly. I've tried to take less, and all it does
>is make me suffer.
>
>Here's a bit from a good article about chronic pain that explains more
>of the doctors' side of it:
>http://www.aarpmagazine.org/health/prisoners_pain.html
>
>"An estimated 75 million Americans suffer from chronic pain, according
>to the American Medical Association, and numerous studies have shown
>that patients often don't receive the medication that could provide
>relief. Undertreatment runs as high as 50 percent among advanced-stage
>cancer patients and 85 percent among older Americans living in long-term
>care facilities.
>
>Much of this suffering is preventable. Experts do know how to reduce
>pain safely. In particular, physicians now know that opioid
>analgesics—medicines such as morphine and oxycodone—provide relief for a
>wide spectrum of pain problems, with relatively few side effects when
>taken as prescribed. 'We can't cure everybody who is in pain, but we
>can make almost everyone feel better,' says Scott Fishman, chief of the
>division of pain medicine at the University of California, Davis, and
>president of the American Academy of Pain Medicine. 'Becoming a
>prisoner of pain is not an inevitability.'
>
>The problem is that the most effective medications cause skittishness
>among many physicians. Poor medical-school training has left them
>unaware of the tools at their disposal and even the importance of
>treating pain. Many harbor the false impression that opioids frequently
>lead to addiction or unmanageable side effects, even when used correctly
>for a legitimate medical need.
>
>Worse, some physicians fear that if they deliver humane pain care,
>they'll face prosecution by the federal Drug Enforcement Administration
>(DEA) or state medical boards. In recent years, a number of respected
>doctors have been investigated and even prosecuted after prescribing
>large amounts of opioids. The result, according to experts, is an
>environment that scares doctors away from practicing good medicine."
>
>--
>Doctors who are uncomfortable prescribing pain meds should refer their
>patients to a pain management specialist. Well, really what they should
>do first is excise the endo that is causing the pain, but since most of
>them don't have the training to do that, they should refer you to an
>endo specialist who can thoroughly remove the disease.
>
>Of course, not all of us have access to an endo specialist. My
>situation is that I can't get to a specialist for several more months
>because I have to wait to change my insurance from HMO to PPO (and I've
>been waiting since last summer). My HMO doctors gave up this past fall
>(after one negative lap!) although my endo symptoms continue, and they
>keep getting worse, too. My obgyn couldn't find any endo, so they put
>me through a number of GI tests which turned up nothing (except a couple
>ulcers caused by NSAIDs). Afterwards they said that's all they could do
>and referred me to the pain doctor - without any diagnosis beyond
>"chronic pelvic pain". They were some really lame doctors, but I tried
>changing my PCP and the new one can't help either, nor could any of the
>4 other in-network obgyns and REs that I saw afterwards (nor the other 3
>or 4 I saw before the first lap!). The new PCP wouldn't even give me
>the name of an endo surgeon that another patient of hers went to because
>he's out of network - until I told her I was changing to PPO insurance.
>When I asked why she wouldn't give me the name she said well you can't
>go to him anyway! Only the RE would even agree to attempt another lap
>(although they all agree the endo was probably missed the first time and
>I need another one) but she does electrocautery and didn't even want me
>to do a bowel prep before surgery. A lot of my symptoms seem to suggest
>bowel endo, and she told me that would require another operation with a
>bowel surgeon to do a resection if she found endo on the bowel. Well,
>no thank you - electrocautery is an inferior method of removing the
>disease because they can't always burn deep enough to get it all, and
>they can't burn it off of sensitive areas (like the intestines) that
>might be damaged by the heat. I just haven't been able to find a doctor
>in network that I trust, so I'm waiting to change to PPO insurance which
>will at least cover half of the surgery with a specialist. There are a
>couple other so-called endo specialists that are in-network, but I
>haven't heard good things about them. The only thing keeping me going
>is my pain doctor and the meds.
>
>(Sorry I had a crappy day and I'm going way off topic from your
>questions!)
>
>I was very fortunate that the pain doctor was sympathetic and willing to
>work with me, in spite of my lack of diagnosis, and even though he
>hasn't worked with endo patients before. I did have a consultation with
>the specialist who will eventually do my surgery, and we talked about my
>problems with the insurance and the HMO doctors. He gave me a letter
>summarizing my case and outlining the next steps he wanted me to take
>before surgery, which helped me show the pain doctor that I really am
>trying to find a hopefully permanent, surgical solution. I get the
>impression that my pain doc is rather disgusted with the way the
>insurance is dealing with me, and he's made it clear that he'll help me
>as long as I need it - of course we both hope that after I do get the
>surgery I'll be able to taper off of all of it!
>
>Please be careful with the NSAIDs, they are really rough on the stomach,
>and be sure you aren't taking more than 4 grams of tylenol a day (that's
>only eight 500mg doses), you can damage your liver taking more. Good
>luck getting some better help with the pain. Keeping a pain diary
>helped me get my referral, and it helps me see what's working and what
>isn't. I highly recommend keeping one - it will reassure doctors that
>there is written documentation that you need the meds and are taking
>them as prescribed.
>
>Having surgery with a skilled doctor is a much better solution than pain
>management, but when you're stuck like I am at least opioids can give
>you some of your life back while you wait. For me they are the
>difference between working fulltime and being unable to do anything but
>lie in bed all day and cry.
>
>Hope this helps!
>
>At Mon, 9 Apr 2007, Tracey wrote:
>>
>> A little background :)
>> 44 yrs old,... DX w/Endo (stage 4) 8-9 yrs ago.
>> 3 laps. so far to remove what could be removed easily by a reg. Gyno.
>>Areas left behind include culdesac,ligaments that support the back of
>>uterus to spinal muscles.?? ureters and colon.
>>In your experience,... How common or what percentage of us require
>>narcotic pain meds regularly?
>>
>> My reg. Gyno will only prescribe them following a Lap.
>> She does'nt feel the need for me to take Tyl #3 or vicoden as needed.
>>I have many days where I'm in horrible pain and have nothing to take but
>>OTC med. (advil or tylenol)
>> as you or anyone here can imagine,... they do almost nothing~
>> Thanks for your time
>> Tracey (NY)
>
>--
>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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