Re: Finally, a doc with an answer!!!
From: Alyson (anonymous@obgyn.net)
Mon Feb 12 07:06:27 2007
It actually wasn't Dr. Cook, I was just referring to him as another doc
having some info online regarding chronic pelvic pain. I don't mind
mentioning the anti depressant. It is called Elavil (the generic is
Amytriptaline (sp?)). It is a "tricyclic" anti depressant that is
commonly used to treat patients with chronic pain conditions. You take
it at night before bed. It has made a huge difference in my sleep...I'm
actually sleeping through the night, getting a very restful night of
sleep, and waking up feeling rested. I think that has been the biggest
benefit so far (and the only side effect I've noticed is dry mouth). I
don't want anyone to think I am advocating use of anti depressants in
place of treatment, my doc did also suggest that I see a therapist to
work through the depression caused by dealing with such chronic pain.
--
Alyson
At Sun, 11 Feb 2007, Abby wrote:
>
>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/
>>>
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)