Symptom Spotlight – “Ascites”*

Today’s Spotlight Symptom is:  “Ascites”

Many mesh-injured women and men suffer from this condition, yet it seems to be one of those symptoms that many doctors write off as “idiopathic” when seen in mesh-injured patients. Please refer to yesterday’s blog post to understand how doctors use the term “idiopathic” in a clinical setting.

Click here to learn how to Pronounce Ascites

Definition of Ascites: Ascites is the accumulation of fluid (usually serous fluid which is a pale yellow and clear fluid) that accumulates in the abdominal (peritoneal) cavity. The abdominal cavity is located below the chest cavity, separated from it by the diaphragm. Ascitic fluid can have many sources such as liver disease, cancers, congestive heart failure, or kidney failure. (SOURCE: http://www.medicinenet.com)

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Below are actual pictures of Ascites in mesh-injured patients. These four women have shared these intimate photos in hopes that their injuries will help YOU, the reader, or another injured person you may know.

THANK YOU TO THESE MESH WARRIORS!

Ascites_Picture_Mesh_Injury

 

“While a tense abdomen filled with fluid is easy to recognize, initially, the amount of ascites fluid may be small and difficult to detect. As the amount of fluid increases, the patient may complain of a fullness or heaviness in the abdomen. It is often the signs of the underlying disease that initially brings the patient to seek medical care.” (SOURCE: emedicinehealth.com)

As I explained in yesterday’s blog, when a patient goes to the doctor with a symptom that doesn’t present in the most common medical context, many doctors do not pursue further understanding about why a common symptom is presenting in an uncommon way.

For example, the most common cause of Ascites is cirrhosis of the liver. So, say a mesh-injured woman presents to her physician with Ascites, but has no history of liver disease or alcoholism, and no cirrhosis of the liver. What happens next; or more appropriately, what should happen next?

The process of diagnosing the underlying cause of any symptom is performed by using the method of differential diagnosis. In the case of Ascites, one other possible explanation for the symptom is:

“Those who have spontaneous bacterial peritonitis (an infection of the peritoneum) develop abdominal pain and fever.” (SOURCE: http://www.emedicinehealth.com/ascites/page3_em.htm)

It is now well known that mesh can cause life-threatening and recurrent infection. So it seems to me that further investigation would be crucial to any patient with mesh who presents with Ascites.

Differential Diagnosis – the determination of which of two or more diseases with similar symptoms is the one from which the patient is suffering, by a systematic comparison and contrasting of the clinical findings.

Physicians are taught to follow these procedures to continue to rule out every cause, until a fotolia_5910589_XSshort list of possible causes remain. Ruling out underlying causes of any symptom(s) is carried out through a sequence of examinations and diagnostic testing.

With this symptom in particular, I am hearing from many women who are sent away by their doctors with some variation of an excuse, claiming ignorance, or at best, simply treating the condition with pharmaceuticals while refusing to perform simple diagnostic procedures and testing that could provide that doctor with more information and eventually to a better form of treatment, or cure ,and the underlying cause of the symptom.

So, when a mesh-injured patient presents with Ascites, and the physician has ruled out the most common cause of this symptom (cirrhosis of the liver), then his training requires that he begin to rule out additional possible causes.

In graph form, the process of ruling out causes for Ascites might look something like this:

ascites

 

Doctors are trained to use the above method with every symptom or illness. It is part of their daily scope of work, so why do I so often hear from women that they go to the ER, to their family physicians, to their OB/Gyns, and to their Urogynecologists with this disturbing symptom only to be told something like this, “I don’t know what this is,” or “I’ve never seen this before.”? The above process for differential diagnosis is relatively simple. Even the diagnostic testing is relatively simple, as noted above.

To find out more about testing used in the diagnosis of suspected Ascites, refer to the below pictures, and click on these links to learn more.

Abdominal Ultrasound

abdominal ultrasound

Diagnostic Paracentesis

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Computed Tomography (CT Scan)

anatomy_of_a_CT_scan

These women describe to their physicians that this symptom is not simply uncomfortable, but it’s PAINFUL. They describe shortness of breath, difficulty breathing, naseau and vomiting, and the obvious limitations in lifestyle and decreased quality of life – not being able to fit into clothing, not being able to lie on their stomachs, pain when sitting, etc. Imagine all the uncomfortable symptoms of being nine months pregnant, except this situation doesn’t end in the birth of a beautiful new family member.

I find it maddening, sickening, detestable, and downright cruel that so many doctors refuse to treat mesh-injured men and women, especially when these patients present with odd or “out of the box” symptoms.

I encourage you to print and use the above graph if you suspect you have this symptom. Bring it to your doctor. Earlier this week, I spoke with a woman who went to her Ob/Gyn with this symptom, and he simply told her there was nothing he could do to help her. What?! She even asked for some of the testing in the above graph, but still the physician refused to help her.

The question we should be asking is “Why?” The action we should be taking is to educate ourselves about our own bodies and what our bodies are trying to communicate to us through symptoms. Our physicians must understand that we know they are refusing treatment, and we know that it’s wrong to do so.

Stay tuned for tomorrow’s “Spotlight Symptom.” I hope this information will help you when you visit your doctor, seeking treatment and a better quality of life.

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*I am not a doctor. This information is for educational purposes, and is based on my own experiences. Seek medical attention for this or any other symptom.

 

 

 

MESH INJURY – “Spotlight Symptoms”

Hello Warriors;

Today, I’m starting a blog series called, “MESH INJURY – Spotlight Symptoms.”*

TVMI encounter an alarmingly typical and recurrent problem when advocating for and with mesh-injured patients. It goes something like this:

  1. Mesh-injured patient develops a disturbing symptom.
  2. Mesh-injured patient visits his/her PCP or a specialist to seek diagnosis and treatment.
  3. Physician performs a physical exam, and says something like, “I don’t know what that is,” or I’ve never seen anything like this [symptom].”
  4. Patient is confused and bewildered and asks if there are tests that could be done or another doctor or specialist who would know more about the symptom.
  5. Physician says, “No,” and doesn’t perform any diagnostics to find out the underlying cause of the symptom (environmental cause, disease process, injury, or infectious pathogen).
  6. Physician prescribes medicine to mask or alleviate symptom(s) (e.g. topical creams for rashes, antibiotics for a suspected infection, maybe some other pharmaceutical to control pain or discomfort, or even an invasive or non-invasive form of treatment).
  7. Patient goes home still symptomatic, with no diagnosis, and with one or more pharmaceutical or other treatments to consider, which may or may not work, since the UNDERLYING CAUSE or UNDERLYING PATHOLOGY, which caused the symptom to manifest, was never studied in depth by the treating physician.
  8. Patient goes home and follows pharmaceutical regimen or advice for treatment.
  9. Pharmaceuticals and treatments do not alleviate symptom(s). Symptom(s) continue.
  10. Patient is left untreated and without a next step.

Paternalistic-vs-Patient-CenteredOftentimes a physician will refer to a symptom as “idiopathic,” which in layman’s terms simply means, “Who knows where it came from?” There is a responsible use of this term, but I see it used irresponsibly too often.

Some diseases are generally agreed to be “of idiopathic origin,” because no one in science can definitively identify an underlying cause. In this case, “idiopathic” is often part of the name of the disease or syndrome itself. Some examples are:

  • Idiopathic Thrombocytopenic Purpura (sometimes called Acute or Chronic ITP) is a bleeding disorder, in which a patient has abnormally low blood platelets, and thus their blood does not properly clot.
  • Idiopathic Hemochromatosis – is another bleeding disorder, in which an abnormal and dangerous amount of iron accumulates in the body’s tissues or organs, including the liver and lungs.

Both disorders are life threatening if left untreated. These disorders present with SYMPTOMS, and when doctors invest in diagnostic procedures, these diagnostic procedures, coupled with symptoms, lead them to a diagnosis, which then leads to a treatment or even a cure.

A serious problem arises when physicians use the word “idiopathic” irresponsibly. In all cases, any particular symptom or cluster of symptoms do originate from some cause, from something, from somewhere, and any doctor who does not search for the underlying cause of a symptom is negligent. “I don’t know,” would be a more accurate physician response in this situation, however; “idiopathic” sounds so much more, you know, medical and stuff. Odd or uncommon symptoms can often co-occur, simultaneously with other more salient symptoms, and when viewed together as a whole, the underlying disease process in these cases, can be more obvious, leading to a higher chance of diagnosis, or a more rapid diagnosis, which then leads to the correct treatment, to the best of the physician’s actual knowledge.

Puzzled male shrugging wearing lab coat

But, what if a patient presents with an idiopathic symptom that does not have a common accompanying symptom or cluster of symptoms that is easily recognizable to an average physician? In my personal experience, this situation is when physicians can get a bit lazy with the use of  the term”idiopathic.”

“Of idiopathic origin” is so much more dignified on a patient’s chart than:

“I have no friggin’ idea, but it’s not my problem, so I gave the patient some samples.”

So, has your physician ever told you, “I’ve never seen that symptom,” or “Your symptom seems to be idiopathic and will most likely resolve on its own.”?

If so, I’d love to hear from you.

Have you had the experience I describe above?device-transvaginal-mesh-edit

If you have, what was the symptom?

Did you ever get to the bottom of it?

Did the physician suggest diagnostic testing, or did you ask for such if he/she did not?

Did you find your doctors to be helpful in assisting you as you continued to pursue a cause, or did you find that your doctor quietly excused himself from your care, and left you to find some other doctor who might help?

Tuesday we’ll talk about the first of many symptoms which are commonly seen in mesh-injured patients, but for which doctors often say there is no explanation or that physician seems to have no drive to find an explanation.

With this series of blogs, I hope to highlight some very common symptoms, for which mesh-injured patients are turned away, left with no medical solution to pursue. Let’s use our collective knowledge as a community to help one another and to help those who don’t understand the realities of ongoing mesh injury.

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*I am not a doctor. This information is for education purposes only and is based on my personal experiences. If you have a symptom, please find a doctor who will help you identify and treat your symptoms.

Dr. Raz Debates: To Mesh or Not to Mesh?

Shlomo Raz, MD

Shlomo Raz, MD

Dr. Shlomo Raz, known wide and far by our Mesh Warrior community as the preeminent surgeon for full transvaginal mesh excision, debates a fellow urogynecological surgeon at the 2015 American Urological Association Annual Meeting, held in New Orleans in May of this year.

Below is the video of the debate.

 

What do YOU think about the merits of each position?

2015 Debate: Surgery for Stress Incontinence – With vs. Without Mesh

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Dr. Raz Debates at the AUA’s 2015 Annual Meeting in New Orleans, taking the position that mesh SHOULD NOT be used to treat SUI.

*WARNING – There is graphic medical content including live-action film of genitalia and surgical interventions.

A PHONE CALL A DAY KEEPS THIS STUDY AWAY: Dr. Sherry Thomas/Agoura Hills, California

Hello Warriors;

Recently it’s come to my attention that an FDA-required study is actively recruiting 900 NEW WOMEN for a study designed to test Coloplast’s Restorelle vaginal mesh for POP. The study aims to test the efficacy of Coloplast’s products against the use of native tissues for the repair of organ prolapse.

Here is the official FDA registration of the study and its participants:

Restorelle® Mesh Versus Native Tissue Repair for Prolapse

LET’S START BY TAKING THE IMMEDIATE ACTIONS THAT WE CAN. Let’s start by calling each of these doctors and/or the designers of this study for that doctor/hospital practice.

TODAY, LET’S CALL THE FIRST DOCTOR ON THE LIST OF RECRUITING PHYSICIANS.

Tomorrow another participating physician, and so on.

Dr. Sherry Thomas - A physician participating in the study: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

Dr. Sherry Thomas – A physician participating in the study: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

Sherry Thomas, M.D.
Agoura Hills, California, United States, 91301
Contact: Shirley Louis    818-991-0988
Principal Investigator: Sherry Thomas, MD, MPH

Suggestions for your call:

  • You might first start by asking questions and listening.
    • WHY are they participating in the study?
    • HAVE they seen the research proving mesh is unsafe as a permanent implant?
    • AREN’T they aware of the adverse reactions of the patients they have formerly implanted?
    • ASK – What’s in it for you doctor? Are you being personally compensated for this study and in what ways?
    • AREN’T they aware of the liability they face. In bellwether trials, some physicians who’ve testified no longer practice.
  • Tell them WHY you do not want this study to proceed
  • Explain to them that you will take other actions, like contacting your state’s AG
  • Tell them that you will use your voice online to dissuade women from becoming patients of their practice

Yesterday, we focused on Dr. Arturo Menchaca of Paris Community Hospital in Paris, Illinois. See that post here: Coloplast Teams Up with Dr. Arturo Menchaca for a studay that will Implant Mesh in New Women