Misdiagnosed Pelvic Disorders

Hysterectomy, Ovary Removal, SIJD, Piriformis Syndrome etc
drkandrew
Posts: 15
Joined: Thu Sep 30, 2010 1:19 am

Misdiagnosed Pelvic Disorders

Post by drkandrew »

Greetings!

It has been my experience that this condition is misdiagnosed in a high number of individuals, or it is seen as several different conditions which have all have a common etiology.

Chronic Pelvic Pain Syndrome
Abacterial Chronic Prostatitis
Abacterial Interstitial Cystitis
Pelvic Myoneuropathy
Coccydynia
Piriformis Syndrome
Lumbago
Sacroilliac Dysfunction

...and a host of others.

In most cases, these are all manifestations or results of the same condition.

Hopefully with further research and awareness, diagnostic challenges that currently will be remedied!
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Misdiagnosed Pelvic Disorders

Post by HerMajesty »

Partly true, because if one thing in the pelvis is a bit (or more than a bit) off biomechanically, everything else begins to fall like dominoes. So you can get several of these conditions simultaneously, from the same originating factor.
I would say partly untrue as well, because the originating factor is quite different in different individuals, so they cannot be all lumped together. For example, persons with "Interstitial cystitis" will be lumped together based on symptoms, whereas one person might have it from the secretory issues of schogren's syndrome and another might have it from faulty neural signals secondary to pelvic injury - and yet both are treated the same, focusing on the bladder which is the wrong place to look. So in that sense the conditions are very different and these should be classified and treated separately - the antithesis of being all the same condition.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
drkandrew
Posts: 15
Joined: Thu Sep 30, 2010 1:19 am

Re: Misdiagnosed Pelvic Disorders

Post by drkandrew »

Sjögren's syndrome, and other conditions like it, are relatively easy to diagnose. I'm referring to those pelvic conditions to which medicine has typically had no conclusive diagnostic abilities, which 'may' all have similar, inter-related etiologies.
drkandrew
Posts: 15
Joined: Thu Sep 30, 2010 1:19 am

Re: Misdiagnosed Pelvic Disorders

Post by drkandrew »

However, you're correct in your statement that looking merely at the bladder is incorrect and over-simplistic. And unfortunately, these conditions are often over-simplified and reduced to their local symptomatology.

More complicated representations of said conditions usually result from a biomechanical and neuromusculoskeletal cause, which allopathic medicine has traditionally had a relatively poor understand and thus poor assessment and treatment outcomes.
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ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: Misdiagnosed Pelvic Disorders

Post by ezer »

drkandrew
You post as condition "pelvic myoneuropathy" in your list. It is a term that was invented by a non-medical professional male pelvic pain forum owner to describe what David Wise diagnoses as anxiety induced pelvic pain. I would hope that you do not seriously consider "pelvic myoneuropathy" as a valid medical condition and that the inclusion of that term was a mistake.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Misdiagnosed Pelvic Disorders

Post by Karyn »

HerMajesty wrote:if one thing in the pelvis is a bit (or more than a bit) off biomechanically, everything else begins to fall like dominoes. So you can get several of these conditions simultaneously, from the same originating factor.
At least in my case, I have found this to be true. I think that's what makes this condition so very hard to diagnose and treat.
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
drkandrew
Posts: 15
Joined: Thu Sep 30, 2010 1:19 am

Re: Misdiagnosed Pelvic Disorders

Post by drkandrew »

ezer wrote:drkandrew
You post as condition "pelvic myoneuropathy" in your list. It is a term that was invented by a non-medical professional male pelvic pain forum owner to describe what David Wise diagnoses as anxiety induced pelvic pain. I would hope that you do not seriously consider "pelvic myoneuropathy" as a valid medical condition and that the inclusion of that term was a mistake.
Please refer to the title of the thread for clarification.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Misdiagnosed Pelvic Disorders

Post by HerMajesty »

The Sjogren's (sorry for the misspelling, on lots of drugs LOL) was only an example - point being - you are NOT looking at one condition, but multiple etiologies lumped together inappropriately.
I definitely agree that most pelvic dysfunction of any kind has a biomechanical and neuromusculoskeletal cause, and hence the training of your average physician is grossly inadequate to deal with it. For example, they use imaging studies which take still pictures of the body, and call something "normal" which is far from normal, however cannot be viewed on a still picture as it is a movement dysfunction. However, even the biomechanical / neuromusculoskeletal, while it can be called a "syndrome", is useless to lump together when it comes to appropraite diagnosis and treatment - for example, within that group you will have one person with scar tissue, on person with joint dysfunction, one person with abnormal muscle spasticity alone, etc.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
drkandrew
Posts: 15
Joined: Thu Sep 30, 2010 1:19 am

Re: Misdiagnosed Pelvic Disorders

Post by drkandrew »

HerMajesty wrote:The Sjogren's (sorry for the misspelling, on lots of drugs LOL) was only an example - point being - you are NOT looking at one condition, but multiple etiologies lumped together inappropriately.
I definitely agree that most pelvic dysfunction of any kind has a biomechanical and neuromusculoskeletal cause, and hence the training of your average physician is grossly inadequate to deal with it. For example, they use imaging studies which take still pictures of the body, and call something "normal" which is far from normal, however cannot be viewed on a still picture as it is a movement dysfunction.
Quite right!
HerMajesty wrote: However, even the biomechanical / neuromusculoskeletal, while it can be called a "syndrome", is useless to lump together when it comes to appropraite diagnosis and treatment - for example, within that group you will have one person with scar tissue, on person with joint dysfunction, one person with abnormal muscle spasticity alone, etc.
Exactly, which is why the therapy I'm providing addresses every possible aspect of the condition, from possible contributions of neuroendocrine to somatovisceral to visceralsomatic to biocmechanical to inflammatory to myofascial to nutritional to autoimmune....etc. etc. This is why it is the only non-invansive technique I'm aware of that will address the full spectrum of the condition(s), and treat each patient individually (all possible contributing variables are addressed during the history and physical examination). It addresses the primary causes and secondary causes/adaptations.
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ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: Misdiagnosed Pelvic Disorders

Post by ezer »

drkandrew wrote:
ezer wrote:drkandrew
You post as condition "pelvic myoneuropathy" in your list. It is a term that was invented by a non-medical professional male pelvic pain forum owner to describe what David Wise diagnoses as anxiety induced pelvic pain. I would hope that you do not seriously consider "pelvic myoneuropathy" as a valid medical condition and that the inclusion of that term was a mistake.
Please refer to the title of the thread for clarification.
I see. So your list contains real and invented medical conditions. If a doctor diagnosed me with pelvic myoneuropathy I would run away.
I am a bit puzzled that [real and distinct] conditions like SIJD and chronic prostatitis could really be a different and single problem.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
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