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Re: Finally, a doc with an answer!!!
From: Alyson (anonymous@obgyn.net)
Sun Feb 11 12:59:11 2007
Oops, sent that last one without writing anything!
I have not seen Dr. Cook, but was relieved by the correlation b/w all
of his research and info and what my doc is relating to me. I hear ya
on the HMO thing. I had to pay out of pocket to see this guy (not cheap
as he is the leading RE in Fla.). Then had to go to my PCP to get her
to write the referrals to the other docs.
We do sound like we have very similar symptoms. My pain is also both
cyclical and chronic despite my varying cycle (I was previously
diagnosed with PCOS, which he is going to run some tests for). The
treatment plan he laid out for me is extensive and he was careful to
reiterate that it would not be a quick result. He has suggested therapy
for the depression and coping mechanisms, physical therapy with a PT
that specializes in pelvic pain disorders/diseases, a consultation with
a pain management specialist, urologist for suspected IC, rheumatologist
for suspected fibromyalgia, addition of dietary fiber and stool softener
for suspected IBS, addition of a prescription grade multi vitamin, the
tricyclic anti depressant, acupuncture for pain management (one of the
very few things that has ever worked for me), and continuous Loestrin
bcp's after I've had all of my blood work done.
I've been doing alot of reading about the fibromyalgia and the
description is uncannily similar to my symptom set. Interestingly one
of the treatments is the use of the specific anti depressant he
prescribed.
He seems to think that if we can make sure we are addressing all of the
other possible causes of the pain, then we can isolate any persisting
pain that may be caused by the endo in spite of the continuous bcp's.
I have alot of reasons for not wanting surgery right now. Sounds really
ridiculous, but I just don't have time (the least important of my
reasons). My last surgery came along with several complications, no
relief, and was only a year ago. Then there's that good old HMO that I
am also going to have to deal with, last but not least...if we can get
this under control without needing surgery I think that is fantastic. If
not, then I can work on being able to see one of those specialists like
Dr. Cook (or maybe even this guy) so that I hopefully don't have to
repeat the whole exercise yet again.
Alyson
At Sun, 11 Feb 2007, D wrote:
>
>Thanks for clarifying, and sorry for the confusion. Is Dr. Cook your
>doctor? I saw him out of pocket for a consultation in October, have been
>working out insurance issues since then. He wanted me to have a GI
>workup for possible intestinal involvement which I still haven't been
>able to get done thanks to my HMO - it would have been a second opinion
>(I had a negative GI workup this past fall), and the GI he works with is
>out of network. Of course the HMO doesn't have a GI who specializes in
>endo or GI "pain of unknown etiology" and doesn't recognize that as a
>"medical necessity", etc. so treatment for me is pretty much limited to
>pain management until I change insurance.
>
>Some of my symptoms sound similar to yours - the leg, hip, back, and
>pelvic pain at least - except that I've been on continuous BCPs for
>nearly two years now. My pain is both chronic and continues to follow a
>monthly cycle, even though I haven't had a period in all that time. I
>hurt all month long, but 10-12 days are consistently worse than the
>rest.
>
>May I ask why you are declining to have surgery? I was likewise
>impressed by Dr. Cook, and I've read excellent things about his
>surgical skills - I'm hoping to have surgery with him in the next few
>months. How much pain relief does he expect you will be able to get
>without removing the endo?
>
>At Sun, 11 Feb 2007, Alyson wrote:
>>
>>Perhaps I should clarify...it was really late when I was writing last
>>night.
>>He by no means was saying that I no longer have endo and no, he's not
>>planning to remove it. I have had two laps in two years and
>>specifically declined to have surgery again any time soon. He readily
>>agrees that now that I am no longer on the hormones, the endo is
>>certainly responsible for my cyclical pain (which includes the hip, leg
>>and back pain). What he is referring to is the chronic pain between
>>cycles (that was still present when my cycles were suppressed by some
>>seriously powerful meds, specifically Danazol). My hip pain includes
>>pain that actually feels like it is in my hip sockets (which is where he
>>is concerned about the fibromyalgia). The placebo affect refers to
>>those screaming altered nerves in the pelvic area. He was saying that
>>the hormones likely are doing there job with the endo, but are unable to
>>affect the nerves because the nerves do not respond to hormone
>>treatments. You take the hormones, your endo pain may be eased and your
>>body temporarily thinks those nerves feel better too (placebo), but
>>actually no one is treating the other issues that are aggravating them
>>and so eventually your brain starts to recognize that pain source again.
>>He is not saying it is a placebo for endo, but one for those angry
>>nerves that are not being addressed by hormonal treatments.
>>I am by no means saying this is a blanket diagnosis for all women who
>>are experiencing chronic pelvic pain. I have stage II endo, no
>>adhesions found during previous surgeries, have tried BCP's of several
>>varieties, Aygestin, Depo Provera, and Danazol. Each time I tried a new
>>treatment (including the surgeries) I followed the same pattern. Felt
>>better for a month or so and then started hurting like heck again. My
>>pelvic pain is not focal between cycles, it is broad and intense. When
>>he examined me I did not have pain when he palpated the areas where my
>>endo has been known to persist. All of these things are what led him to
>>diagnose chronic pelvic pain syndrome ***in addition to*** my endo.
>>He is proposing that we treat my endo, but now also treat all the other
>>things that are likely contributing to aggravating those altered nerve
>>centers.
>>It is a whole body approach under the proven acknowledgment that endo
>>can often just be the tip of the ice berg when you experiencing a
>>drastic decline in your overall health. Again I mention Dr. Andrew
>>Cook. Check out pelvicpain.com
>>After seeing doctor after doctor who just shrugged their shoulders at me
>>and suggested Lupron this is the first time a doctor has looked beyond
>>the obvious.
>>Alyson
>>
>>At Sun, 11 Feb 2007, D wrote:
>>>
>>>Hi Alyson,
>>>
>>>I'm glad you are getting some relief, but I'm curious, does your doctor
>>>intend to remove your endo? Or if he believes the endo is gone, how does
>>>he know that? Endo often causes hip, back and leg pain, especially when
>>>it is located retroperitoneally (behind the peritoneum).
>>>
>>>I also have to take issue with what he said about hormonal treatments
>>>being "placebos" - they certainly don't cure endo, but I've taken enough
>>>different birth control to know that different BCPs can definitely make
>>>my symptoms better or worse, no placebo about it. Hormones absolutely
>>>effect endo! And other body systems, too. They may be band-aids, but
>>>they are not placebos.
>>>
>>>I don't mean to be a wet blanket, but some of what he said just doesn't
>>>sound right. Of course it's wonderful that he listens to you and
>>>actually has some ideas, and it's great the antidepressants are helping
>>>- I hope you'll let us know how things progress.
>>>
>>>Best,
>>>D.
>>>
>>>At Sat, 10 Feb 2007, Alyson wrote:
>>>>
>>>>I just had the most amazing doctor's appointment this week and am
>>>>finally sitting down to share. After a seemingly endless merry go round
>>>>of doctors shrugging their shoulders at me, this one spent three and a
>>>>half hours with me. He is a reproductive endocrinologist that I was
>>>>referred to for lack of any other immediate options. I've been
>>>>suffering with chronic pelvic, back, leg, and hip pain for quite some
>>>>time now along with extreme exhaustion and some mild bowel problems.
>>>>This explained that in many cases women with endometriosis who are
>>>>suffering from chronic daily pain that have tried many treatments with
>>>>only temporary relief are commonly suffering from chronic pelvic pain
>>>>syndrome (often touched off by an initial disease or trauma like endo).
>>>>I've actually read about it before and found some information on Dr.
>>>>Cook's site (although he refers to it as Multi System Disease). It
>>>>essentially involves an actual cellular change in the nerves in the
>>>>pelvic region prompting a chronic pain signal being sent to the brain in
>>>>response to the overall unrest in the area. (He used the analogy that
>>>>the nerves are angry and letting you know about it) It also involves a
>>>>collection of other issues that we've all discussed here like IBS, IC,
>>>>fibromyalgia, and depression. He explained that often what happens with
>>>>endo patients suffering from chronic pelvic pain syndrome is that when
>>>>they are given an endo treatment (i.e. hormone/period suppression) that
>>>>seems to work for a month or two and then doesn't seem effective anymore
>>>>they are actually experiencing a placebo effect. The brain thinks "I've
>>>>got the drug, I must be feeling better" and ignores those singals coming
>>>>from the nerves. The endo pain is actually under control, but the brain
>>>>slowly realizes that those pelvic nerves are still screaming. So, you
>>>>feel the pain again, associate it with the endo, and assume the
>>>>treatment isn't working. That has been my pattern, all the way up
>>>>through Danazol and stopping short of Lupron. Which he, thankfully,
>>>>insisted would just have the same effect for me.
>>>>He suspects that my chronic hip and leg pain is likely fibromyalgia and
>>>>referred me to a rhumatologist (can't for the life of me figure out how
>>>>to spell that at the moment) and a urologist for my bladder pain. I am
>>>>hoping something will pan out there. Surprisinlgy one of the first
>>>>things he addressed was my history with sexual assault. He talked about
>>>>a well studied connection between sexual abuse/assault and chronic pain
>>>>from the basis that the lasting effects of the abuse/assault weakens the
>>>>brain's ability to process and cope with chronic pain. That coupled
>>>>with the depression leaves the body ill equipped to deal with the
>>>>chronic pain signals. He felt that my extreme exhaustion and pain flare
>>>>ups following activity were all linked to the depression. So, he
>>>>prescribed a mild anti depressant often used for treatment of chronic
>>>>pain conditions. I've taken it for almost a week now and feel so much
>>>>better. I felt really conflicted about it at first. I didn't know what
>>>>to expect of it and did not want to feel dazed, doped, etc. But I have
>>>>to say, I have slept better than I have in ages, my pain level has
>>>>significantly decreased, I'm not wiped out anymore, and the only side
>>>>effect seems to be dry mouth in the mornings.
>>>>I think the best thing (and saddest in a way) was that he offered to
>>>>lead the charge in getting me healthy again, coordinating the doctors,
>>>>etc. and he even sat down and wrote out a treatment plan for me. He
>>>>was careful to reiterate that it is not in my head, it is a real, live,
>>>>issue affecting women with pelvic trauma (endo, IC, IBS, etc.) It
>>>>saddens me that such care has become such an infrequent experience these
>>>>days.
>>>>So, I'm off for blood work next week, the other docs the following two
>>>>or three weeks, and a consult with a PT specializing in pelvic pain
>>>>issues. This is the most hope I've had that I'll actually find a way to
>>>>feel like myself again.
>>>>Keeping my fingers crossed,
>>>>Alyson
>>>
>>>--
>>>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/
>>>
>--
>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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