The Story #11: Female Problem Mysteries
“You’re around 50. Just wait a few months. It’ll all go away. You can wait that long, can’t you?” Dr. Norman Tacktill’s response to my complaints of painful, heavy periods and endometriosis.”
In mid-June, I saw Dr. Norman Tacktill for abdominal and endometrial tissue pain that was radiating down my left leg and to the back. Dr. Tacktill was referred by my primary physician, Dr. Silis, who said Tacktill delivered his and his wife’s first baby. He examined me and concluded that my pain was all colitis related. He wasn’t convinced I had endometriosis even though a recent sonogram noted the existence of an endometrial strip. He said the only way to diagnose endometriosis is through pathology and by biopsying the entire uterus, which would entail getting a hysterectomy. He likened the typical tissue biopsy to playing the mechanical “claw” game in which the operator of a toy crane fishes for toys and prizes. More often than not, he said, the claw comes up empty handed.
He said my being around 50 years old, if I waited a few months, the pain from my dysmenorrhea (painful, heavy menses) and endometriosis would go away. “You can wait that long, can’t you?” he asked rhetorically. I continued to have monthly periods for the next two years.
He seemed perturbed at my questions about options for treating my endometriosis. He leaned back in his chair, crossed his arms and gave me the look of a doctor who had become irritated that a patient had the gall to question his knowledge. I requested a dilation and curettage or D&C (a procedure used to determine abnormalities in the uterine lining). He said this procedure was usually only considered if biopsy results were inconclusive. He didn’t recommend either the D&C or the biopsy. He said laparoscopy was often used to determine the cause of pelvic pain and other gynecologic disorders, but he didn’t recommend this procedure either.
When I suggested investigating hormonal changes that may be causing my abnormal uterine bleeding, Dr. Tacktill declared that it was impossible to get a true reading of someone’s hormones because hormone levels fluctuate vastly even within the same day. The assertion that hormone levels cannot be ascertained with any certainty is contested by many medical practitioners who pool multiple saliva samples throughout the day or require a 24 hour urine test to give a truer reflection of hormone levels.
In fact, Dr. Mitchell had recommended a Meridian Valley Laboratory 24 hour urine hormone analysis, which was completed in October 2004 with supplemental report on June 16, 2005. My results were so out of the norm that Dr. Mitchell wasn’t sure what to make of it, and I have very little understanding of what the results mean. In his October 2004 report, the lab physician, Dr. Jonathan Wright, wrote that my total estrogens and progesterone were both low, and the testosterone level was barely normal. He stated that the estriol level indicated incomplete estrogen detoxification, that DHEA and androsterone levels were low, and etiocholnolone was barely normal. He added that four minor “tetrahydro” derivatives of more major steroids were lower than normal.
Further evidence of the extent of my medical problems was seen on an abdominal sonogram taken May 10, 2005. The report noted mild fullness of the right intrarenal collecting system and that the right renal pelvis was prominent in size. Dr. Alexis Kladakis, the examining physician, suspected this finding may be related to reflux or obstruction. The sonogram also showed evidence of endometriosis and multiple tiny clear cysts within the uterine myometrium (the thick muscular layer of the uterus), which Dr. Kladakis noted, indicated adenomyosis.
Adenomyosis is defined as the presence of endometrial glands and supporting tissues in the muscle of the uterus where it would not normally occur. When that gland tissue undergoes growth during the menstrual cycle and then subsequent sloughing, the old tissue and blood cannot get out of the muscle and flow out of the cervix as in normal menses. This trapping of blood and tissue causes uterine pain (menstrual cramps) and abnormal uterine bleeding as some of the blood finally escapes the muscle. This results in prolonged bleeding and spotting. It is often associated with fibroids and other conditions such as ovarian cysts, prolapse and even gynecological cancers that can cause pelvic pain.
Up until recently, it was said that adenomyosis was only diagnosable by the pathologist looking at a hysterectomy specimen. Now magnetic resonance imaging (MRI) can more accurately diagnose adenomyosis. MRI is the preferred diagnostic tool for focal lesions, which can be treated by surgical resection of the endometriosis without doing a hysterectomy.
Although ultrasound can also be used to diagnose adenomyosis, sometimes it has difficulty differentiating smaller fibroids (leiomyomas) from adenomyosis.
I had an inkling that misplaced endometrial tissue had adhered to structures in the abdomen and were causing the fistula formations to which Dr. Barkin had referred. It’s possible these fistulas were caused by endometrial cells or tissue that migrated outside of the uterus through the blood or lymphatic vessels. Contrary to what some doctors believe, in endometriosis, misplaced endometrial tissue grows on the membranes of other organs or causes scar tissue to grow in the abdomen (and sometimes elsewhere), which can bind internal organs to each other, causing organ dislocation. When binding occurs, the pain can be more debilitating on a daily basis than the painful menstrual symptoms of endometriosis.
Bowel endometriosis is said to affect approximately 10% of women with endometriosis, and can cause severe pain with bowel movements. In my opinion, my pain was severe enough to warrant a laparoscopy. But none of the doctors I was referred to for abdominal and pelvic pain were surgeons, so none were keen on my suggestion for laparoscopic surgery (a minor surgical procedure in which a laparoscope, a thin tube with a lens and a light, is inserted into an incision in the abdominal wall to detect abnormal growths).
Part of the problem, I found, is that doctors don’t seem to be keeping up with the latest advances and medical knowledge. Many of the doctors I saw held antiquated ideas about endometriosis and yeast infections or didn’t know that the symptoms of coronary distress in women differed from those in men. None seemed to grasp the importance of referring a patient needing treatment for endometriosis to a gynecologist specializing in the function and diseases of female reproductive organs rather than to an obstetrician specializing in delivering babies who sidelines in gynecology. The “gynecologists” I saw readily admitted their passion for obstetrics when I tried to engage them in a conversation about treatments for endometriosis. They recommended oral contraceptives or estrogen therapy to alleviate painful menses. Had they known that estrogen not only encourages systemic yeast growth but also leads to depressed cellular immunity, they should have informed the patient whose life was at risk.
Endometriosis is thought to be an autoimmune condition. Women with endometriosis commonly have problems with extraordinarily painful periods and severe cramps. In severe cases, the bleeding can continue for weeks, leading some women to require iron supplements and even blood transfusions. Additionally, women with endometriosis frequently suffer from painful ovarian cysts, making ovulation quite painful. Sometimes, the cysts burst and can cause life-threatening infections in the pelvic cavity. A CT scan of my abdomen and pelvis taken on June 7, 2005 found small cysts on the ovaries and liver.
On June 22, 2005, I saw nephrologist Jenny Nazal for pain that radiated from the lower abdomen in front to the kidneys in back. Dr. Nazal ordered a comprehensive metabolic panel, urine protein electrophoresis, urine C&S and U/A. There was nothing out of range indicated on the test results.
In the waiting room above the receptionist’s counter, there was a sign stating that only questions about the kidney will be addressed. Of course, she’s a nephrologist, I thought. I didn’t realize until I tried to have a conversation with Dr. Nazal how difficult it was to limit your subject specifically to the kidney. I felt certain my questions were kidney related. But all were deflected with responses like, “That’s urology,” or “That’s outside of the kidney.”
She had no idea what low serum uric acid indicated. She told me that 90% of her patients needed to be hospitalized, hence she was used to seeing patients much sicker than me. I suppose she could tell I was exasperated by cyclical discourse that never broached on a possible cause for the pain in the area of my kidneys. At the end of our follow up visit, she admitted, she didn’t know. She said, “Maybe you had a kidney stone pass. Maybe you didn’t. I don’t know.” I give her credit for saying that she didn’t know. Her statement says more about the true state of medicine, the art of healing the sick, than about anything particular to her.
Not long after my visit with Dr. Nazzal, Julie, a physician’s assistant in Dr. Mitchell’s office, asked me about my office visit to the nephrologist. “Another dud,” I said. “She didn’t know the significance of low serum uric acid, either. She said that meant I had less of a chance of developing kidney stones.” Julie said she knew that was BS. She said the same thing happens with low cholesterol. “Some doctors think low cholesterol is good,” she said, “but it’s like low serum uric acid and other borderline blood work results. The results actually indicate an underlying condition that may be detrimental to health.”
On July 20, 2005, I saw urologist Dr. Richard Rhame for further evaluation of what could be causing my collecting system dilation. Dr. Rhame was an older man with a respectable list of accomplishments, having earned his BA from Princeton University in 1950 and his MD from The George Washington University Medical School. He interned at Johns Hopkins University and served as a medical officer in the U.S. Navy before completing residencies in general and urological surgery at Yale Medical Center. He had served as Chief of Urology at both DC General and Alexandria hospitals.
Personally, I found him to be guilty of pride and hence not very helpful to me. With pride comes blindness. You think you already know the answers, so you don’t bother to check the facts. Like some other doctors I saw, Dr. Rhame believed that aside from oral thrush, yeast infections occurred only in women’s vaginas. He had never heard of systemic yeast infections of the gastrointestinal tract. He didn’t know the significance of low blood uric acid. His notes indicate the uric acid tests he conducted were intended to rule out gout, the result of high uric acid levels. To me, it seemed as if he had this static knowledge base learned in medical school. It had served him well over the years, so why change things now?
Dr. Rhame wanted me to undergo a voiding cystourethrogram (a test that takes video of contrast dyed urine as it flows through the urinary tract) to identify any blockages or reflux as reasons for the dilated collecting system. He couldn’t tell me the recommended treatment for reflux. The procedure is invasive and involves injecting contrast fluid, a known cause for precipitating crystals that can lead to kidney stone formation. I had already experienced ill side effects of contrast dye from two previous abdominal CT scans. This was a non-starter.
If you’re considered guilty by association, it’s at least noteworthy that complaints were filed with the Virginia Medical Board against one of Dr. Rhame’s colleagues at Alexandria Urological Associates, Dr. Jeffrey Wong. The medical board found in favor of the physician who was alleged to have wrongfully removed a patient’s kidney thought to be cancerous. In Wall of Silence, authors Rosemary Gibson and Janardan Prasad Singh write:
“Complaints to the state medical boards about a physician’s incompetent or negligent care rarely end up in a disciplinary action. Medical boards are much more likely to discipline a doctor for abuse of drugs or alcohol than for care that doesn’t meet a quality standard the public would expect. A doctor in Virginia was found guilty in federal court of unlawful sexual conduct with a patient and was sentenced to a month in jail. According to state records, it took two years for the medical board to notify the physician that his license to practice would be placed on probation and that he must complete fifty hours of continuing medical education and undergo a psychiatric evaluation. Even though his license was restricted, he was still authorized to see patients, with the provision that a chaperon be present for all physical exams of women and of children under the age of 18. The medical board wrote to the physician a year later stating that he complied with all the terms set out by the board, that his license to practice medicine was no longer restricted, and that he no longer needed a chaperone when conducting physical exams.”
Medical malpractice attorneys often advise their harmed clients against contacting a medical society or board regarding the doctor and care received. They say if the medical board fails to find fault with the care provided, the determination may be used as part of the doctor’s defense in the client’s case. In addition, typically such boards solely act as disciplinary bodies. A ruling against a medical provider would not provide the harmed monetary compensation or needed medical assistance.
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