Re: Finally, a doc with an answer!!!
From: Abby (anonymous@obgyn.net)
Sun Feb 11 20:37:21 2007
I was curious, I hope you don't mind me asking what the name of the
antidepressant is that Dr. Cook prescribed for you? I have wondered at
times if I need to go on something to deal with this pain too.
--
Abby
At Sun, 11 Feb 2007, Alyson wrote:
>
>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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