 |
 |
 |
|
|
|||
|
|
||||
|
||||
|
|
Re: Finally, a doc with an answer!!!From: Alyson (anonymous@obgyn.net)Sun Feb 11 12:22:28 2007
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/ >
|
|
Return to ![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)
Technical Problems: webmaster@obgyn.net
Last Updated: Fri Jan 2 03:54:43 2009