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A diagnosis no one ever told me about! A diagnosis no one ever told me about!

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Unread 05-24-2003, 08:50 PM
A diagnosis no one ever told me about!

I went to the GI doctor a few days ago and he was reviewing my history and he talked about my interstitial cystitis and endometriosis and then he brought up my IBS diagnosis?????? I had IBS symptoms before my hysterectomy(magically cured by my hysterectomy) but I never discussed it with a doctor.....ever. I guess I was embarrassed so I never talked to a doctor about these symptoms. Instead, I suffered in silence. Anyway, I was caught off guard and when that happens, I don't think clearly so I didn't ask anything about it. I did tell this doctor that I had no idea I was diagnosed with IBS, that no one ever told me. He didn't have much to say to that. Now I'm wondering why I have this diagnosis. Did a doctor put that in my medical report to try to explain my pelvic pain and not tell me??? Weird! Have any of you ever had this happen? My gyn sent me to a stress clinic before my hysterectomy to make sure that stress wasn't part of my pain. Well, at that clinic, I had to answer lot's of questions. I had a bad childhood and it has affected my whole entire life. So now this is in my medical report and the GI doctor asked me about this and if I thought stress had anything to do with my esophageal pain. I sure hope I'm not labeled as a stressed out person because of this! Maybe I should order my medical report just to see what's really in there. I wonder if there's anything else I don't know about??????? Also, when I started having esophageal pain, I went to the ER and the doctor there said I was diagnosed with dyspepsia(I think that's what it's called) and no one told me. She was not happy with that diagnosis because the doctor didn't do any tests to confirm the diagnosis. Why don't doctor's tell you things like this???? Do they think we're too dumb to understand?
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Unread 05-25-2003, 10:02 AM
A diagnosis no one ever told me about!

Almost every doctor's report I have read has some inaccuracy in it - sometimes major wrong and sometimes not enough to kick up a fuss about. Sometimes doctors don't pay attention and leave out things or put in things that don't belong. I wouldn't get all upset about this. I'd get the report and read it myself and make any comments necessary to the doctors who matter. If you have symptoms if IBS and think the diagnosis is accurate, fine. If not, speak up. Especially with complex situations such as most of us here have, many doctors miss things in their reports. At least that's been my experience. I just got the operative report from my last surgery and it doesn't even say I had an epidural. At first I felt like having it corrected. Now I don't give a hoot.
Unread 05-25-2003, 10:33 AM
A diagnosis no one ever told me about!


I have had similar things happen to me too...and I agree that it is upseting.

I have noticed that with the more Dr's/Specialists I started to see...the more confusing my health picture became.

That's what I love about the pain clinic that I am currently in. All of the Dr's are working together...and they 'usually' have copies of test results/reports etc. There still are some unanswered questions though...

Have you had any GI testing recently? I agree that you should get copies of your reports...they can be very eye opening. Also, you will be able to discuss the reports with your Dr's.

As far as stress playing a part in your pain...Well I can tell you that stress in one of my biggest triggers when it comes to FMS/CFS...pelvic pain etc. I'm very sorry that you had such a hard time growing up

It's hard to 'cut stress out of our lives.' All we can do it try to stay away from stressful situations...but that is not always easy, especially when we are in pain all of the time.

I don't blame you for being upset. Just when we think we have a handle on what's going on...a doc throws you a curve ball. And it can be hard to recover quick enough to ask the right questions while you are there - I've had that happen to me too sweetie.

Let us know what you find out sister....S and

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Unread 05-25-2003, 02:29 PM
A diagnosis no one ever told me about!

Definately get all of your medical reports including dr's notes. I had to have another person intervene. It has helped my case a great deal to finally have a couple of dr's upset about my past treatment. These are transplanted dr's that don't play golf together, go to school or consult with one another. I have learned my lesson on, well I can't help you any further but my buddy dr so & so is willing to take on your case. If I ever hear those words again I will run away as fast as I can. Sorry to sound so bitter but I guess I just am!
Good Luck,
Unread 05-25-2003, 08:07 PM
A diagnosis no one ever told me about!

Aw Pas I'm sorry sweetie. It does seem the deeper we get into this stuff the more confusing it gets. I wouldn't read too much into what one doc said but I would defintely order your medical records. I found my to be interesting, and who knows perhaps one of your doctors will be able to find some clues.
Unread 05-25-2003, 09:55 PM
A diagnosis no one ever told me about!

I know OH to well what you are feeling!!

I had a lap 10 years ago for CPP and he said there was nothing there and it was all in my head. 8 years later and 3 months of non-stop bleeding I had another lap and low and behold I had stage 3 endo, adeno and PCOS. In my surgical report from my first lap he put in there that he found some spots with a clear substance on them and the pictures CLEARLY showed endo. I never read it and my Gyn I have now read it to me and was floored I had gone 8 years with it.

They never cease to amaze me how if they dont know what it is they say it is nothing!

Unread 05-26-2003, 08:36 AM
A diagnosis no one ever told me about!

I agree about ordering ALL your past medical records..I found sowm very interesting things in mine that I wasnt told about Like you I wondered the same:
Why don't doctor's tell you things like this???? Do they think we're too dumb to understand?
There are laws about having access to these & that they be accurate! Here is sime info I found discussing this & a patients rights:

Your Rights As a Hospital_Patient:

Ethical Considerations of Informed Consent:

Is there a Law about getting getting Records or Lab reports from Drs Offices?

Several states have enacted laws regarding a patient's access to medical reports and records that apply to health care providers in the outpatient setting and/or inpatient facilities. The laws usually provide that the request for records be in writing from the patient or her designated representative (e.g., guardian, lawyer, insurance agent) and that the records shall be furnished within a reasonable time and upon payment of a reasonable fee, unless the disclosure is likely to be adverse to the patient. A reasonable time is usually defined as somewhere in the range of 30 to 60 days. Thus even if you live in one of these states, the law would probably not apply to the situation you describe. In addition to any legislative right of access, or in those states that have not enacted such statutes, there may be a common law right of access to the records or reports. There is not much case law on this issue and most of it deals with psychiatric or mental health records which the courts have recognized as being potentially more detrimental to the patient (and thus more likely to be legitimately denied to the patient). In general, the few courts that have addressed the question have recognized the patient to have some property interest or right to the records and each case turns on its unique, particular facts. Again these cases do not apply in your situation in which the CT report was not permanently denied but was delayed 3 to 4 days due to the policies or operating procedures of the radiology clinic and the ordering doctor's office. The courts have generally treated the medical record in the doctor's office as belonging to the doctor, not the patient, but recognize that the patient has an interest in and some right to the information contained therein, at least in regards to actual results of diagnostic tests. It is unclear how far this right of access extends to the records of the doctor's own thought processes and impressions, especially in the case of psychiatric illnesses. In either case, courts have recognized that the reading of a medical record could be misinterpreted by a non medical person and potentially cause harm to a patient. This can apply not only to patients with mental health problems but also to sexually sensitive data, sexually transmitted diseases or even cancer. I think it is safe to say that most doctors would say that the best practice is to review reports of diagnostic tests with the patient or at least before release to the patient to make sure they are not likely to cause the patient harm because of medical terminology or findings that the patient might misinterpret to be much more serious than is really the case. Or, if the result of the test is quite serious, the physician would likely feel a duty to be available to the patient at least by phone to answer questions and present a plan of action. What if the radiologist or nurse had given you a report that said there are changes that possibly indicate cancer and your mother was so upset she got into a traffic accident, when in fact, the doctor would have communicated to you and your mother that there were changes seen on the CT scan that were abnormal but very unlikely to be cancerous changes or that they may represent a very early small, entirely treatable cancer? I think you can see why the doctor may want to review the results of tests before they are conveyed to the patient by someone who does not know the patient or who is not in a position to properly counsel the patient because they lack the training or authority to diagnose and offer treatment options or are not privy to all the medical information about the patient that should be considered. The question you raise is really one of timing - what is the physician's duty to obtain and report test results immediately or at least as soon as they are available to him or her? There is no set answer and the duty will vary depending on the particular facts and circumstances. The physician-patient relationship imposes on the physician a duty to use reasonable care, skill, and diligence in diagnosis and treatment. In the usual case, this includes the duty to inform the patient of the results of diagnostic tests in a reasonably timely manner. Whether or not a doctor breaches that duty depends on whether he or she has adhered to the minimum standard of care that applies to the particular facts and situation. In most states, this standard of care will be some variation of what most similarly situated doctors would do or would consider to be reasonable in similar circumstances. The standard of care usually must be proved through expert testimony. In other words, other similarly situated doctors would testify as to what is a usual and reasonable time in which like test results are related to patients under similar circumstances. While patients are understandably anxious to find out the results of diagnostic tests, I suspect that three or four days or even a week or longer to report the result of a CT scan in a non-emergency, outpatient setting is not uncommon or unreasonable unless there are particular facts that would call for a higher diligence. This gives the radiologist a day or two to read the report and forward it to the ordering physician and the ordering physician another day or two to review the report, consider the options of how best to proceed, and to inform the patient of the results either by phone or mail depending on the urgency of the particular situation. The policy of not releasing the test results until the patient's own physician has reviewed the results is for the protection of the patient, at least in part, and I suspect that it is the usual practice.

Comments on Your Medical Records:

Human Rights Bill ... annual performance reports Custody records Doctor's records ...


Right to Inspect and Copy:
You have the right to inspect and copy your medical information that may be used to make decisions about your care. Usually, this includes medical and billing records, but does not include psychotherapy notes. To inspect and copy your medical information, you must submit your request in writing to The Woman's Wellness Center. If you request a copy of the information, we may charge a fee for the costs of copying, mailing, or other supplies associated with your request. Your physician may deny your request to inspect and copy in certain very limited circumstances. If you are denied access to medical information, you may request that the denial be reviewed. Another licensed health care professional will review your request and the denial. The person conducting the review will not be the person who denied your request. We will comply with the outcome of the review.

Right to Amend:

If you feel that medical information we have about you is incorrect or incomplete, you may ask us to amend the information. You have the right to request an amendment for as long as the information is kept by or for this practice. To request an amendment, your request must be made in writing. Your request should include the reason that supports your request. We may deny your request for an amendment if it is not in writing or does not include a reason to support the request. In addition, we may deny your request if you ask us to amend information that:
Is not part of the information which you would be permitted to inspect and copy
Is accurate and complete.
Here is some info I found on FMS & Trauma that I thot you'd be interested in as well:

Traumatic Events, Health Outcomes, and Health Care Use in Patients with FM:

Fibromyalgia syndrome [FMS] is a chronic condition that is Fibromyalgia syndrome [FMS] is a chronic condition that is
resistant to treatment and has no known cause. However, researchers have
hypothesized a number of possible antecedents, including traumatic
events. The present study examined the relationship between the
occurrence and perceived severity of different traumatic events, health
outcomes, and health care use in patients with FMS.

Methods: Participants were 600 members [95% females, 85% Caucasian, mean
age =54] of a health maintenance organization who met the American
College of Rheumatology criteria for FMS. A self-administered
questionnaire was used to assess a patient's trauma history. The
dependent variables included health status, sleep, pain, depression, and
health care utilization.

Results: Ninety-one percent of the participants reported experiencing at
least one traumatic event prior to the onset of FMS symptoms. The average
number of events experienced was 3.6 [SD = 2.3] and, using a 10-point
scale, the average severity rating was 7.5 [SD = 2.4]. Analyses
demonstrated modest support for a relationship between the recall of past
traumatic events, their perceived severity, and several outcomes.

Conclusions: While the effect sizes of the relationships between trauma
and outcomes were small, results suggest that prospective studies
including an examination of the occurrence and perceived severity of
traumatic events may provide useful information about the etiology of

Fibromyalgia syndrome [FMS] is a chronic condition that is resistant to
treatment and has no known cause. While the most prominent feature of FMS
is widespread muscular pain, other symptoms include fatigue, sleep
disturbances, morning stiffness, headaches, depression, and irritable
bowel syndrome (1). Because there are no agreed-upon biological markers
for FMS, a diagnosis relies on a patient's report of widespread chronic
pain, a tender point examination, and ruling out diseases with similar
symptoms (1,2).

While studies of FMS and its correlates have increased recently, there is
continuing uncertainty about the causes and consequence of FMS.
Researchers have hypothesized sleep deficits, neurotransmitter
imbalances, muscle fiber irregularities, and psychological problems as
plausible causal mechanisms (3). It has also been suggested that trauma
may precede the onset of symptoms (4).

"Stress" and "trauma" are sometimes used interchangeably [or together as
in stressful trauma or traumatic stress]. Considerable research on stress
includes life events that are positive [such as marriage or the start of
a new job], but in this paper we restrict our examination to events that
are perceived as extremely negative [e.g., physical injury, sexual abuse]
and significant.

The association between traumatic events and poor health outcomes, such
as chronic pain, is consistent with the theoretical framework suggesting
that exposure to stress precedes adverse health outcomes. Catastrophic
stress, such as that associated with post traumatic stress disorder
[PTSD], is related to poor subjective health status, increased health
care utilization, morbidity, and mortality (5). Early work investigating
the stress-illness relationship had a biochemical focus, emphasizing
adrenomedullary and adrenocortical responses to stress (6-8). This
research laid the groundwork that has implicated prolonged and repeated
secretion of catecholamines and corticoids in the development of
illnesses like cardiovascular disease, hypertension, and various other
immune-related deficiencies.

Later work involved the psychological, or cognitive, component of the
stress response (9,10). This work recognized the critical role of the
person's cognitive appraisal of an event in determining its effects. The
acknowledgment that people respond differently to similar stressors gave
birth to a literature investigating coping mechanisms. Personality
variables, like optimism, negativity, hardiness, and efficacy have all
been implicated in the management of stressful events (11). Such coping
strategies affect the social and behavioral aspects of disease [i.e.,
social support, pain behaviors, etc.], as well as the consequent
physiological response to stress.
An example of the relationship between traumatic events and health is
found in the abuse literature. Sexual and physical abuse have been linked
to poor physical and psychological outcomes. A history of sexual and/or
physical abuse is pervasive among women suffering from chronic pain;
women with a past history of sexual abuse report more sleep disorders and
chronic pain with no identifiable cause (12), greater use of medical
services, and poorer perceptions of their health, than nonabused controls
(13). While the prevalence of abuse varies widely among studies, the
rates reported with chronic pain patients are higher than those typically
reported among healthy controls.

Research conducted specifically within the FMS population has revealed a
higher reported incidence of physical and sexual abuse among FMS
sufferers than controls. For example, one study found a higher prevalence
of lifetime sexual or physical abuse in a sample of FMS patients than in
a sample of rheumatic disease controls: 17% versus 6% and 18% versus 4%,
respectively (14). However, the rates for any prior abuse were much
higher: 53% for FMS versus 42% for controls (14). Similarly, Walker and
colleagues compared FMS patients with rheumatoid arthritis [RA] patients
and reported rates of sexual or physical assault to be 92% for the FMS
sample versus 67% for the RA sample (15). Taylor and colleagues report
rates of sexual abuse for FMS to be 65% compared to 52% for healthy
controls (16). Thus, different definitions of abuse and the way it is
assessed produce considerable variability in the estimates of rates, but
women with FMS tend to have a greater prevalence of abuse than controls.

Other less studied events have also been related to poorer physical and
psychological outcomes. For example, involvement in motor vehicle
accidents is associated with both PTSD and major depression (17, 18).
Investigations of physical trauma among FMS patients have revealed that
physical injury, such as that resulting from motor vehicle accidents or
surgeries, was related to loss of employment, receiving long-term
disability, and a decrease in physical activity (19). Some studies
suggest that physical trauma is a precipitating event in the development
of FMS. For example, in a sample of patients who had recently experienced
a neck injury [primarily whiplash], 21.6% were later diagnosed with FMS;
none of the patients had a chronic pain syndrome prior to the trauma
(20). Greenfield and colleagues reported that 23% of FMS sufferers
experienced a physical trauma prior to the onset of FMS symptoms (19),
while Turk and colleagues found that 47% of their FMS sample reported
surgery [9.8%], illness [6.6%] or injury as a result of an accident [30%]
as precipitating events (21 ).

Not only are there higher prevalence rates of past abuse among FMS
patients, as well as an established association between physical trauma
and FMS, but also there is also evidence that the occurrence of such
events is strongly related to various outcomes for this population. For
example, a study comparing women with FMS to those with RA indicated that
total maltreatment scores and trauma severity were significantly related
to both psychiatric distress and functional impairment outcomes, but only
for the women with FMS (15). In another study of women with FMS,
emotional trauma was related to more physician visits, functional
disability ratings, and fatigue, while physical trauma was related to the
receipt of disability compensation (22). Thus, research has produced
evidence that sexual and physical abuse, as well as other physical
traumas, is associated with FMS.

Establishing relationships between trauma and outcomes is the first step
in understanding the mechanisms connecting the variables. The specific
aim of the present study was to examine the relationship between the
occurrence and severity of specific traumatic events and several health
outcomes: health status, sleep, pain, depression, and health care
utilization, among FMS patients.

Past research led us to hypothesize that the occurrence and perceived
severity of traumatic events would significantly predict health outcomes
within the FMS population. Specifically, physical traumas were
hypothesized to have consistent significant relationships with physical
and psychological health outcomes.

Pain Coping Strategies and Quality of Life in Women with Fibromyalgia:

Work-Related Stress: What You Need to Know:

Fibromyalgia Studies and other Important Info:

Pain Diary Worksheet:

Pain Inventory Form:

I hope this is of some help ((Vbjack)) Pls keep us posted....(((hugs)))
Unread 05-31-2003, 10:42 PM
A diagnosis no one ever told me about!

So sorry to hear of your surprise/confusion. I am a fellow endo sufferer and also a radiographer.

First: Any GI diagnosis should have testing to back it up. I don't know how many patients have come in for GI studies saying they have been diagnosed with reflux and other issues when our exam clearly shows otherwise. GI exams with fluoroscopy use "real-time" moving xrays to document movement of xray dye through the GI tract. This xray dye shows how well the system is functioning as well as showing structural abnormalities "ulcers, polyps".

Second" I have documented endo on my bowel and also have IBS symptoms. IBS is more a diagnosis based on a cluster of symptoms rather than on one or two specific documented findings. I am always careful to point out to my physicians that I have similar syptoms that have been chalked up to the endo so that I don't end up with that as a diagnosis on my records. Hopefully the surgery will take care of some of that too.

Last: I have always been able to link stress to endo flare-ups. I have not heard much from other sources, but know there is a connection for me. My current bout of aggravated symptoms came on about 5 days after my four-year old DD had her tonsils out. 5 days of no sleep, fighting with her to drink, and all the other fun that goes with a sick kid and I was ready to beg my Dr for pain pills. That was end of 3 weeks ago and still can't get it under control.

The best way to keep your records straight seems to be coordinating you care with your physicians. Try to keep seeing the same 1 or 2 dr's. Use the same pharmacy for all your meds etc. The more hands in the pot, the more chance of errors it seems.

Also, you can petition dr's to correct your records. If you feel an entry is incorrect you can try to get them to change it. Accurate records are important from a medical standpoint, but insurance companies may also deny coverage or apply wait limits on anything they deem to be a pre-existing condition, even if the records they are basing everything on are not accurate.

Keep your chin up and hope this may clear the mud a bit for you.
Unread 05-31-2003, 11:26 PM
A diagnosis no one ever told me about!

Thanks for your responses everyone! I wish I would have asked what doctor diagnosed me with IBS! I go to Kaiser Permanente. All a doctor has to do is look in the computer and my medical records are right there. I could ask anyone about this. Better yet, I need to just get a copy of my medical records for myself. Another thing I found....after my hysterectomy....was that my gyn put in my surgeical report that he offered me an endometrial ablation.....we never even discussed that. It really makes me wonder what else is in there!

Thanks again

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