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Bleeding Disorders Overlooked in Women With Heavy Periods

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Four years ago, when the heavy period bleeding which I’d had since adolescence suddenly became much worse, I never would have predicted that the cause of the bleeding would not be correctly diagnosed and treated until after I’d had an unnecessary surgery, a preventable major complication of another surgery, months of severe anemia and more. And yet many women may be at risk for similar problems without realizing it.

Heavy period bleeding (medically called menorrhagia) is a very common problem in women of reproductive age, affecting up to 30 percent of women. This type of bleeding can be very debilitating and difficult to deal with, as well as posing a diagnostic challenge for doctors to identify the underlying cause.

There are many possible causes of menorrhagia, including hormonal imbalances and dysfunction of the ovaries, fibroids, uterine polyps, adenomyosis, intrauterine devices (IUDs), and in rare cases, cancers of the reproductive system. One cause that is not often considered is a bleeding disorder. Up to 20 percent of women with menorrhagia may have von Willebrand’s disease, which is the most common of the so-called “mild” bleeding disorders (which include any bleeding disorder not classified as a severe hemophilia). The number of women with menorrhagia who have an undiagnosed bleeding disorder is even higher when platelet function disorders, another type of “mild” bleeding disorder, are included.

Studies have shown that gynecologists are not likely to consider a bleeding disorder as a possible cause when investigating menorrhagia, and are not likely to refer women with heavy period bleeding to a hematologist for further investigation, even when gynecological causes are ruled out. One study found that only four percent of physicians surveyed would consider von Willebrand’s disease as a possible diagnosis in women with menorrhagia, and only 3 percent of physicians would refer patients to a specialist.

Studies have also shown that women with undiagnosed bleeding disorders are more likely to be subjected to unnecessary surgical procedures, including hysterectomy, as a “fix” for the bleeding that doesn’t address the underlying problem. Menorrhagia is the major reason for approximately 300,000 hysterectomies per year in the U.S. Given the prevalence of undiagnosed bleeding disorders in this population, 60,000 or more hysterectomies per year could be performed in women whose menorrhagia could be addressed with treatment for their bleeding disorder instead of a major surgery. Women with von Willebrand’s disease are more likely to undergo a hysterectomy (26 percent of women with von Willebrand’s disease, compared to 9 percent of women in the control group) and to have the hysterectomy at a younger age.

In addition, undiagnosed bleeding disorders have a serious effect on women’s quality of life, and put women at risk for medical complications. Although women who have not experienced it, or men, who of course cannot experience it, may dismiss heavy period bleeding as simply a nuisance, it is far more than that. It can cause serious problems such as anemia, complications from childbirth and surgical procedures, lost work or school time, lifestyle issues, psychological disruptions, and have major effects on quality of life. The health-related quality of life for women with menorrhagia and a bleeding disorder was studied and found to be similar to that of HIV-positive men with severe hemophilia, underscoring the difficult symptoms and lifestyle issues that can result from these problems.

My own medical history reads like a clinical case study designed to educate doctors about the possible pitfalls of undiagnosed bleeding disorders, and judging by the numbers, there are many more women out there going through the same thing. After my son was born, the menorrhagia I’d had since I was a teenager worsened significantly. I had gynecological causes ruled out—no polyps, fibroids, or cancer. I already had been diagnosed with endometriosis, but that was not thought to be the cause of the bleeding. My gynecologist deemed the cause to be “hormonal” and spent two years trying to fix it with birth control pills, which didn’t work. At some point during those two years I asked for a referral to a hematologist, which I was told I didn’t need after a few preliminary blood clotting tests came back normal. I had an endometrial ablation, which also didn’t work, and caused my pelvic pain to worsen so severely that my first period after the ablation landed me in the ER (increased pelvic pain is a known risk with endometrial ablation).

I had enough of a history the first time I asked to warrant a referral. My history at that time included bleeding complications with my first laparoscopy for endometriosis, history of heavy periods with gynecological causes ruled out, easy bruising and bleeding gums. However, it took four more years of suffering with the symptoms of anemia, low ferritin, and heavy periods, one unnecessary surgical procedure (the ablation), and a preventable surgical complication that required a subsequent surgery (I had a major internal hemorrhage after excision surgery for endometriosis and removal of my left ovary and tube) and three more requests for hematology referrals, before I was finally referred to a hematologist and ultimately diagnosed with a bleeding disorder. And some studies show that the diagnostic delay from onset of bleeding symptoms can be up to 16 years! It is time for this to change. Gynecologists need to consider the possibility of bleeding disorders, and work with hematologists when appropriate, when trying to diagnose the underlying causes of menorrhagia.

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Hysterectomy: Greed and Ignorance Reign

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Hysterectomies and C-sections are two of the most overused surgeries. One in three women has a hysterectomy by age 60 and about half eventually have one. Approximately 600,000 women undergo hysterectomy annually, 50,000 to 60,000 of which are for a cancer diagnosis. This graph (figure B) depicts the number done for cancer (which are typically done as inpatient). However, the graph misrepresents total hysterectomies as it depicts only inpatient figures. In 2014, 70% of hysterectomies were done as outpatient – in ambulatory surgery centers or in hospitals with discharge in less than 24 hours. So one could say that ~90% of the ~600,000 are unnecessary. ACOG says that 76% do not meet ACOG criteria.

The Greed Factor

What is driving the high rate of hysterectomies? The more cynical among us would argue that money or greed is a large contributing factor and there are certainly data to back this up. In this article, a gynecologist talks about attending a seminar where gynecologists were coached on how to cultivate patients for hysterectomy to maximize fees. The healthcare dollars wasted on unnecessary medical procedures, especially hysterectomy at $17B, is discussed here. Another factor contributing to this gross overuse is the failure to properly diagnose and inform patients of treatment options and their risks and benefits. This failure may also be due, at least in part, to greed.

Ignorance at Play?

Still yet another variable may be at play: ignorance. For whatever reason, there is a huge disconnect between the perceived benign nature of the procedure and its reality. The research here, here and here are just a few examples of the compelling evidence of the damaging effects. These effects are affirmed by the thousands of comments on the various hysterectomy articles on this blog and others.

A Gynecologist’s Defense of Hysterectomy

A comment by a gynecologist on one of my articles reflects the ignorance and arrogance regarding the many aftereffects of hysterectomy (with or without ovary removal / castration).

Here is the May 3, 2018 comment by gynecologist Yvonne Treece, MD, FACOG:

There is no or minimal evidence to support many of these claims particularly in regards to pelvic ligaments providing support to the entire torso, loss of sensation, loss of sexual pleasure, fatigue, joint and ligament pain. There is some risk of nerve damage, but it is very small and does not result in loss of sensation over the whole vulva and vagina. There is a small risk of damage to bowel or bladder, with the ureters at highest risk. The percentages given in the YouTube video are grossly exaggerated, and most have no proven correlation with hysterectomy. The uterosacral ligaments are preserved in supracervical and most laparoscopic hysterectomies. The vast, vast majority of hysterectomies are uncomplicated. Most of the YouTube video is false. The false and misleading information is a disservice to patients. Where is the evidence for these claims?

I disagree that 70-90% of hysterectomies are unnecessary. Source? As alternative treatments become available, hysterectomy rates are falling. I am an OB/Gyn, and certainly do not do unnecessary hysterectomies, especially not for profit! That is a very hurtful, and malicious thing to say. It is not true of any one I know. Certainly someone may be performing unnecessary surgery for profit, but that is highly unethical, and illegal. Not mainstream.

Please look at an anatomy book (like the slides on the YouTube videos). A lot of your claims are physiologically nonsensical. It makes me sad that people have bad outcomes sometimes, but it saddens and frustrates me when patients are given misinformation attributing physical symptoms to a hysterectomy when they are unrelated.

I would be happy to have a dialogue with you about hysterectomy. I’m sure we could both learn from each other.

Here is my rebuttal comment: 

Yvonne – As a doctor in a specialty (gynecology) whose training and livelihood is entrenched in doing hysterectomies (as well as oophorectomies), it’s natural to deny and defend. I don’t know how much of your misinformation is due to lack of proper medical training (including intentional omission by medical schools) and how much is in defense of your profession and livelihood. But regardless, I will address your points:

1) The severing of the ligaments that run from the uterus to the pelvic wall cause a collapse of the torso. It’s an anatomical fact. To use an analogy – If you cut through bridge supports, the bridge will collapse. A woman can still be “fit” after a hysterectomy but her figure / skeletal structure will be altered. Her midsection will gradually shorten and thicken (even absent weight gain). Women’s comments corroborate this. Further evidence of this can be seen as an indentation at each side of her back (one woman referred to it as a “plane” across her back) where her rib cage is now sitting on her hip bones. Another telltale sign is a crease / line that starts a couple inches above the navel and then gradually lengthens across her midsection as her rib cage drops. I doubt you typically observe patients before their surgeries and a few years after in their underwear to be able to observe these changes. And it seems many women end their relationships with their surgeons. They certainly don’t need birth control or any other reproductive services.

2) Another anatomical fact – The uterus separates and anchors the bladder and bowel. Its removal displaces them increasing risk for dysfunction in the short and long-term including incontinence and prolapse. With so many women having had hysterectomies, it’s no wonder incontinence is so prevalent.

3) Another anatomical fact – A shortened and sutured shut vagina lacks the bundle of nerves at the bottom of the cervix as well as the tip of the cervix that heightens sexual pleasure for both the woman and man.

4) How can you truly believe that severing of nerves and blood vessels, including those running through ligaments that are severed, does not cause loss of sensation and sexual pleasure? It is basic physiology that innervation and blood flow are vital to sensation. Many women even report loss of nipple sensation. And furthermore, uterine orgasms cannot physically happen without a uterus. This is a HUGE loss for many women. And many women who still have ovaries (the lucky ones whose ovaries haven’t “died” due to loss of blood flow and feedback with the uterus) report loss of libido and sexual function. There are PLENTY of women’s stories of shattered lives on the web if you really care to know.

5) Most hysterectomies may be (in your words) uncomplicated (absent the “surgical” errors of ureter, bladder, bowel damage, nerve damage, blood clots, hemorrhage, infection, morcellated / upstaged tumors, anesthesia harms, death). But the after effects are forever (as are the after effects of some complications when they occur). And shockingly, 55% of hysterectomies include removal of ovary(ies) (equivalent of a man’s testicles) despite the average woman’s lifetime risk of ovarian cancer being a measly 1.3%. More ovaries are removed as separate surgeries.

6) According to Obstetrics & Gynecology August 2013, ~50,000 hysterectomies are done for cancer. That is less than 10% of all hysterectomies making over 90% unnecessary. Media reports of declining hysterectomy rates are misleading in that they typically report only inpatient hysterectomies and the large majority are now done outpatient / ambulatory as I’m sure you’re aware. In 2014, 70% of commercially insured hysterectomies were outpatient.

7) I’m concerned that you also fail to inform your patients of the many increased health risks associated with hysterectomy (with ovarian “conservation”) – cardiovascular disease (3-fold), metabolic syndrome, increased Body Mass Index, increased BP, renal cell cancer, colorectal cancer, thyroid cancer. Ovary removal (castration) or post-hysterectomy ovarian failure is also common and is associated with another whole list of health risks such as cardiovascular disease (7-fold), stroke, lung cancer, osteoporosis, hip fracture, dementia, parkinsonism, impaired cognition and memory, mood disorders, adverse ocular and skin changes, sleep disorders, more severe hot flushes. Even unilateral oophorectomy (with or without hysterectomy) is associated with increased risk of cognitive impairment, dementia and parkinsonism.

Needing CME credits? You may have just earned some although you should have already known all of the above since this is your specialty.

Let the women who have had unnecessary hysterectomies (and those who love them) decide who is doing a “disservice to patients.”

Alternatives to hysterectomy are great but some of those also cause permanent harm. Ablation has been shown to increase risk of hysterectomy due to Post Ablation Syndrome. The blood can get trapped in the uterus (behind the scarred lining or due to a stenotic cervix) and/or back up into the tubes causing chronic and debilitating pelvic pain. Although procedures are the money makers, they should only be used as a last resort especially when they can do more harm than good. That applies to any specialty.

You said you “certainly do not do unnecessary hysterectomies, especially not for profit!” You mentioned you’re an ob/gyn so I assume not a gynecologic oncologist. In that case, all hysterectomies you do should be for benign conditions which makes them unnecessary.

If “performing unnecessary surgery for profit” is not “mainstream” then how do you explain the high rate of hysterectomies when less than 10% are done for cancer? And why do residents have to do so many hysterectomies yet ZERO myomectomies when many hysterectomies are done for fibroids? Yes, it’s very unethical but it’s the “standard of care” so it continues.

It’s no surprise that she did not respond to my rebuttal even though she stated “I would be happy to have a dialogue with you about hysterectomy.”

It Comes Down to Money

Gynecologists are supposed to be the experts on female anatomy and physiology. There is an abundance of medical literature on the harms of female organ removal. So how can they not know the consequences of removing the uterus and/or ovaries? As Upton Sinclair said:

“It is difficult to get a man to understand something when his salary depends on his not understanding it.”

You can read all my articles about three of gynecology’s destructive procedures – hysterectomy, oophorectomy, endometrial ablation – here. They include citations to medical literature.

For the truth about female anatomy and the lifelong functions of the female organs, check out this video:

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Heavy Menstrual Bleeding

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Heavy menstrual bleeding is a significant cause of poor health in women, and yet it is rarely discussed openly because of the widespread societal taboo against frank discussion about normal functions of women’s bodies. About 30 percent of women will experience heavy menstrual bleeding at some point in their reproductive lifetime. It can have a substantial effect on a woman’s quality of life including placing limitations on physical activities, social activities, and ability to work during menstruation. Anemia is often a result of heavy menstrual bleeding, and anemia can cause serious fatigue, weakness, dizziness, cognitive problems, depression, anxiety, and more. Although all of these issues have as significant an effect on a women’s quality of life as many other debilitating illnesses, most women probably feel quite isolated in dealing with the problem, because they may feel uncomfortable disclosing it to friends and family members.

What Does Heavy Menstrual Bleeding Mean?

Because of the lack of discussion and education around this topic, many women do not know what may constitute heavy menstrual bleeding versus normal menstrual bleeding. I know that for me, as an adolescent, I assumed it was normal to have to double up on tampons and pads, to need a bathroom every hour or two during my period, to get up several times at night to change tampons and pads, and to always have a change of clothes with me. It wasn’t until I had been seriously anemic for many years that I started to question what I had been told up to that point even by doctors, which was that my heavy periods were normal. We need better menstrual education for teens, so that problems like heavy menstrual bleeding and other women’s health issues can be diagnosed earlier.

The medical definition of heavy menstrual bleeding, also known as menorrhagia, is bleeding that is abnormally heavy (more than 80 mL of blood per period), abnormally prolonged (more than 7 days of bleeding), or both. However, even knowing the medical definition of heavy menstrual bleeding does not necessarily help women identify whether or not their bleeding is normal, because translating that number into what they are experiencing with their menstrual cycle is quite difficult.

Most women probably assume that most or all of the menstrual fluid is blood, but actually on average, only about 36 percent of the fluid is blood. And this percentage varies widely among women, from 1.6 percent to 81 percent. The guideline typically used is that bleeding that soaks through a large pad or tampon in under two hours, going on for several hours, or with large clots, is too heavy. But even among brands of pads and tampons the absorbency can vary from less than 1 mL to almost 100 mL. Because of the difficulty in quantifying bleeding, in many cases doctors will use a woman’s subjective description of her heavy menstrual bleeding as an indication that there is a problem that needs treatment. In some cases this will result in unnecessary treatment for a problem that does not really exist.

Causes of Heavy Menstrual Bleeding

When considering the possible causes of heavy menstrual bleeding, it is important to remember that heavy menstrual bleeding can result from gynecological causes, as well as hematological causes (bleeding disorders). Usually when a woman presents to her doctor with heavy menstrual bleeding, she will be referred to a gynecologist, resulting in an investigation of gynecological causes. However, even when the gynecological investigation does not provide answers as to the cause of the bleeding, hematological causes are not typically investigated. In approximately 50 percent of cases of heavy menstrual bleeding, no cause is found.

Gynecological causes of heavy menstrual bleeding include hormone imbalances, dysfunction of the ovaries, uterine fibroids or polyps, adenomyosis, pelvic inflammatory disease, and in rare cases, cancer. Hematological causes include inherited bleeding disorders such as von Willebrand disease, platelet function disorders, hemophilia A and B, or other clotting factor deficiencies. Bleeding disorders have traditionally been highly under recognized in women, and still are, and some, such as von Willebrand disease, can be hard to diagnose. After gynecological issues are ruled out as a possible cause of heavy menstrual bleeding, it may be important to investigate hematological causes, especially if there are any other bleeding symptoms such as nosebleeds, or abnormal bleeding with dental work or surgeries.

Treatment of Heavy Menstrual Bleeding

Although there are treatments for heavy menstrual bleeding, unfortunately in many cases they are not effective enough. Sixty percent of  women referred to a gynecologist for heavy menstrual bleeding will have a hysterectomy within the five years following the referral. Many of these hysterectomies may not be necessary—in some cases gynecological causes are not being treated effectively enough, or bleeding disorders are not being identified.

If a cause can be identified for the bleeding, treating the root cause, in most cases, is preferable. However, there are also treatment options that can address heavy bleeding regardless of the root cause, and the effectiveness and potential side effects of these options varies. There are non-specific treatments such as hormonal contraceptives and non-steroidal anti-inflammatory medications that are often used for a variety of women’s health conditions, and for some women, these can reduce heavy menstrual bleeding as well. There are also two treatments specifically used for heavy menstrual bleeding that can be fairly effective, but each comes with its own risks. Lysteda (tranexamic acid) is an oral medication used as needed during menstruation, and endometrial ablation is a surgical treatment option.

Lysteda/Tranexamic Acid

This medication has been used to prevent and treat blood loss in a variety of situations, such as in trauma cases, surgeries with heavy blood loss, and patients with bleeding disorders. In 2009, it was approved as an oral medication to treat heavy menstrual bleeding.  This medication works by slowing the breakdown of blood clots, helping to prevent heavy bleeding, and is used when needed during menstrual periods. It can be used for heavy menstrual bleeding from a variety of different causes, both gynecological, and hematological.

A review of multiple studies of the effectiveness of Lysteda concluded that it can reduce menstrual blood loss by up to 50 percent, and that use of Lysteda results in improved quality of life for patients. No significant side effects were seen observed in these studies. However, since Lysteda affects the blood clotting pathway, there is the potential for increased risk of thromboembolism (obstruction of a blood vessel by a blood clot), although studies to date have not shown any increased risk. This medication should not be used in women with active thromboembolism, or in those with history of or at risk of thromboembolism.

Endometrial Ablation Surgery

Another treatment that is used specifically for heavy menstrual bleeding is endometrial ablation. This is a procedure that surgically destroys the lining of the uterus. The surgery is minimally invasive, requiring no incisions—it is done through the vagina and cervix. In some cases, it can even be done in a doctor’s office, depending upon the method used and the patient characteristics. This treatment is usually used once other less invasive options have failed. However, pregnancy after endometrial ablation can have serious complication, so endometrial ablation is only recommended for women who do not plan to become pregnant.

Endometrial ablation is considered a fairly effective treatment for heavy menstrual bleeding. Depending on the method used, 28 to 71 percent of women will have no menstrual bleeding at all after ablation. Patient satisfaction for all methods is 89 percent or higher. However, about one in six women will require further surgery after endometrial ablation. Hysterectomy is the most common surgery after endometrial ablation, and some women will have a repeat endometrial ablation. Further surgery after ablation is considered a “treatment failure” and can result from continued bleeding, pain, or both. Younger age at the time of the procedure is associated with a higher risk of treatment failure.

Although the procedure itself has been shown to be safe and have a relatively low risk of complications, it is also well recognized that pelvic pain can develop or worsen after endometrial ablation. Longer term complications specifically related to ablation include painful obstructed menstruation, hemometra (retention of blood in the uterus), and post-ablation tubal sterilization syndrome, which is a painful condition that can develop in patients who have had both tubal sterilization and endometrial ablation.  About 21 percent of patients have pelvic pain following endometrial ablation. Risk factors for treatment failure with endometrial ablation, in addition to younger age, include painful periods prior to the surgery, endometriosis, adenomyosis, prior tubal ligation, and in some studies, obesity. Endometrial ablation has been used in a wider and wider group of women since its introduction; however, now that risk factors for treatment failure are better understood, women and their doctors can make a better informed decision about whether this procedure would be right for them.

Like many other women’s health issues, heavy menstrual bleeding is a problem that affects many women in significant ways, but is rarely discussed. Many women just put up with it for years or even a lifetime without seeking help. Removing the stigma from discussions about menstrual problems will help many women have a better quality of life and may lead to better treatment options than those currently available.

This post was published originally on Hormones Matter on November 23, 2015.

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Endometrial Ablation – Hysterectomy Alternative or Trap?

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Endometrial ablation seems to be the latest “bag of tricks” in the treatment of women’s gynecological problems. It is an increasingly common procedure used to treat heavy menstrual bleeding. The procedure is premised on the notion that if the endometrial lining is destroyed – ablated – bleeding can no longer occur. Problem solved. But is it? Does endometrial ablation work? Does it resolve the heavy menstrual bleeding and prevent the “need” for a hysterectomy as it is marketed, or does endometrial ablation cause more problems than it solves? The research is sketchy, but here is what I found.

Short-term Complications Associated with Endometrial Ablation

For any surgical procedure there are risks associated with the procedure itself. Here are the short-term complications for endometrial ablation reported in PubMed: pelvic inflammatory disease, endometritis, first-degree skin burns, hematometra, vaginitis and/or cystitis. A search of the FDA MAUDE database included complications of thermal bowel injury (one resulting in death), uterine perforation, emergent laparotomy, intensive care unit admissions, necrotizing fasciitis that resulted in vulvectomy, ureterocutaneous ostomy, and bilateral below-the-knee amputations. Additional postoperative complications include:

  1. Pregnancy after endometrial ablation
  2. Pain-related obstructed menses (hematometra, postablation tubal sterilization syndrome)
  3. Failure to control menses (repeat ablation, hysterectomy)
  4. Risk from preexisting conditions (endometrial neoplasia, cesarean section)
  5. Infection

Long Term Complications of Endometrial Ablation

Endometrial ablation to block menstruation. In order to understand the long-term risks of endometrial ablation, one must understand the hormonal interaction between the uterus and ovaries. The endometrial (uterine) lining builds and sheds in response to the hormonal actions of the ovaries. Ablation scars the lining impeding its ability to shed. But ovaries continue to send the hormonal signals necessary for menstruation and the uterus attempts to function normally by becoming engorged with blood. The problem is, the blood has nowhere to go. It is trapped behind the scar tissue caused by the ablation. This causes all sorts of problems.

Retention of blood in the uterine cavity is called hematometra. If the blood backs up into the fallopian tubes it’s called hematosalpinx.  Hematometra and hematosalpinx can cause acute and chronic pelvic pain. Some data suggest that about 10% of the women who have had endometrial ablation suffer from hematometra. The pelvic pain in women who’ve undergone both tubal sterilization and ablation has been coined postablation-tubal sterilization syndrome.

“Any bleeding from persistent or regenerating endometrium behind the scar may be obstructed and cause problems such as central hematometra, cornual hematometra, postablation tubal sterilization syndrome, retrograde menstruation, and potential delay in the diagnosis of endometrial cancer. The incidence of these complications is probably understated because most radiologists and pathologists have not been educated about the findings to make the appropriate diagnosis of cornual hematometra and postablation tubal sterilization syndrome.”  Long term complications of endometrial ablation. 

So although ablation can have the desired effect of reduced or even absent bleeding, it can be a double-edged sword. This relief from heavy bleeding may, in the long-term, be overshadowed by chronic, debilitating pain caused by the ongoing, monthly attempts by the uterus to build and shed the lining.

Ablation leads to hysterectomy in younger women. The younger a woman is at the time of ablation, the greater the risk of long-term problems that can then lead to hysterectomy. A 2008 study in Obstetrics & Gynecology found that 40% of women who underwent endometrial ablation before the age of 40 years, required a hysterectomy within 8 years. Similarly, 31% of ablations resulted in hysterectomy for 40-44.9 year old women, ~20% for 45-49.9 year old women and 12% of women over the age of 50 years required a hysterectomy after the endometrial ablation procedure.

Another study, reported a similar link between endometrial ablation and hystectomy. “On the basis of our findings one third of women undergoing rollerball endometrial ablation for menorrhagia (heavy menstrual bleeding) can expect to have a hysterectomy within 5 years. If the linear relationship noted during the first 5 years is extrapolated, theoretically, all women may need hysterectomy by 13 years.”

Post ablation tubal sterilization syndrome. A 1996 study of 300 women who underwent ablation found an array of pathological changes in the uterus including: hematosalpinx, endometriosis, chronic inflammation of the fallopian tubes, and acute and chronic myometritis. Eight percent of the women developed intense cyclic pain that necessitated a hysterectomy within 5-40 months post endometrial ablation.

Informed Consent That Isn’t

Recently, Hormones Matter has begun to explore the legalities of the medical informed consent, here and here. With all the adverse effects associated with endometrial ablation, especially the need for hysterectomy later, one must question whether women are informed about those risks. As I have found when investigating this topic, there are few long term studies on endometrial ablation. Many of the articles cited for this post come from paywalled journals that are not readily available to either the patients or the physicians – the costs are prohibitive for both. So it is not clear whether the physicians performing these procedures are aware of the long-term risks associated with ablation. And as one physician suggests, neither the pathologists nor radiologists responsible for diagnosing post ablation pathology are trained to recognize these complications. Without data or access to data and without training, one wonders whether it is even possible to have informed consent for a procedure like ablation.

You know the sayings “never mess with mother nature” and “you never know what you’ve got ’til it’s gone?” We need to heed those words at least when it comes to treatments that can’t be reversed or stopped! At the very least, we have to become thoroughly educated about the risks and benefits of any given medical procedure.

This post was published originally on Hormones Matter in May 2013.

 

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Adenomyosis

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Philipa Bridge Cook

Adenomyosis is a common disease of the uterus, yet little is understood about the causes and risk factors, diagnosis is difficult, and there are few effective treatments besides hysterectomy. Adenomyosis can exist on its own, or in conjunction with other pelvic diseases such as endometriosis. The incidence of adenomyosis in the general population is not known, because estimates of incidence have only been done in populations of women undergoing hysterectomy.

Symptoms of adenomyosis may include:

  • Painful periods
  • Painful ovulation
  • Chronic pelvic pain (all month long)
  • Heavy and/or prolonged menstrual bleeding
  • Large blood clots
  • Pain in the thighs

Adenomyosis can sometimes be asymptomatic, and it is not known why some women can get debilitating pain and extremely heavy bleeding from adenomyosis, while others have no symptoms at all.

The medical definition of adenomyosis  is when glandular tissue, normally only found in the endometrium ( the inner lining of the uterus), is found in the myometrium (the muscle wall of the uterus). Adenomyosis used to be commonly called endometriosis interna, or endometriosis of the uterus, because of the similarity to endometriosis, which occurs when tissue similar to the endometrium is found in the pelvis or elsewhere in the body.

The cause of adenomyosis is not known. There are some studies that associate c-sections, prior uterine surgeries, and/or miscarriages with a risk of adenomyosis, although other studies have found no associations. One theory is that invasion of cells from the surface endometrium into the deeper muscular layers of the uterus can result in adenomyosis. In addition, developmental origins have been proposed, where tissue laid down in the wrong place during formation of the embryo can result in adenomyosis later in life. This theory may be the most likely to be true, as there is some support for this theory in the development of endometriosis, and endometriosis and adenomyosis often occur together.

Diagnosis of adenomyosis is difficult, because there are no tests that can definitively confirm or rule out a diagnosis. In some cases, adenomyosis can be suspected from ultrasound results or MRI results, but normal ultrasound or MRI results do not rule out the presence of adenomyosis. Adenomyosis can also be suspected from pelvic exams, when the uterus is large or tender. Since the main symptoms of pelvic pain and heavy bleeding can result from many other causes, it is difficult to diagnose adenomyosis based on symptoms. Other conditions causing similar symptoms include endometriosis, fibroids, and hormonal imbalances.

Sometimes adenomyosis symptoms can be managed with medication. Pain relievers such as NSAIDs can be used to treat pain, and in some cases hormonal medications such as the birth control pill or a Mirena IUD can treat the symptoms by stopping periods. Medications to control heavy bleeding are often not used by gynecologists, but they can be effective and prevent the need for a hysterectomy if heavy bleeding is the only symptom. The most effective medication for heavy bleeding is Lysteda (tranexamic acid), but DDAVP (desmopressin) can also be used.

Endometrial ablation is sometimes a suggested treatment for the heavy bleeding caused by adenomyosis, but it can make adenomyosis pain worse. In addition, adenomyosis may confer a greater likelihood of endometrial ablation failure. Doctors will often say that “the ultimate cure” for adenomyosis is a hysterectomy. Although hysterectomy is obviously effective at curing uterine pain and heavy menstrual bleeding, it is a major surgery and sometimes has unwanted effects and complications . If we understood the causes of adenomyosis better, we might be able to develop more specific treatments for the underlying cause or causes, and avoid such extreme surgery.

It is commonly stated on medical websites that adenomyosis goes away after menopause. However, it was often said that endometriosis goes away after menopause, and now it is known that for at least some women, maybe most, it does not. We don’t really know the incidence of endometriosis post-menopause because women who complain of pelvic pain after menopause are usually told that the pain cannot be endometriosis, and are not investigated for endometriosis, even if they have a previous history of it. It may be a similar fallacy to believe that adenomyosis goes away after menopause.

It is also often said that adenomyosis is more common in women over 35. The idea that it is more common in older women may come from the fact that it can only definitively be diagnosed by pathology studies post-hysterectomy. Older women with pelvic pain and/or heavy menstrual bleeding may be more willing to have a hysterectomy to solve the problem than younger women, who may want to keep their uterus for child-bearing. Therefore, adenomyosis ends up getting diagnosed more often in the older age group, but may be just as common in younger women. In fact, adenomyosis is starting to be diagnosed more often in younger women, using better imaging techniques.

There are many unanswered questions about adenomyosis and more research is needed in many areas of this disease. Better methods for diagnosis would be extremely helpful, as at the moment adenomyosis can only be confirmed by hysterectomy. Answers about why some women have such severe symptoms while others have none, what causes adenomyosis in the first place, whether it really can persist after menopause, and more, may help lead to less invasive and more effective treatments for this disease.

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Birth Control vs Hysterectomy in Catholic Hospitals

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I was raised Catholic but did not agree with some of Church doctrine and left the Church as a young adult. In my wildest dreams, I never imagined that I would have a hysterectomy and be castrated in a Catholic hospital (or any hospital for that matter) for a benign ovarian cyst. You can read about my Unnecessary Hysterectomy here. I suspect many other women have had healthy organs removed at this greater metropolitan Catholic hospital or some other Catholic hospital. With hysterectomy the second most common surgical procedure and the prevalence of Catholic hospitals growing, millions of women likely have had unnecessary hysterectomies at Catholic hospitals. This made me wonder, why would the Catholic Church condone (and profit from) unnecessary hysterectomies but prohibit contraception. It seems a bit hypocritical at least, unethical at worst.

A Spider Web of Contradictions in Catholic Hospitals

Catholic doctrine prohibits contraceptives. Yet, Catholic hospitals perform hysterectomies and ovary removals (castrations) for benign conditions that can typically be treated with less drastic measures such as contraceptives. Hysterectomy is permanent birth control. So is removal of ovaries. How is hysterectomy justified but not contraceptives?

In an article entitled Do Religious Restrictions Force Doctors to Commit Malpractice, the hazards of treatment at religious hospitals are discussed. In the case of a potentially fatal ectopic pregnancy, removal of the fallopian tube which negatively affects fertility complies with Catholic doctrine while an injection of methotrexate that preserves the tube and fertility does not.

According to Catholic moralists, an injection that destroys an ectopic embryo is a direct abortion, while removing the part of a woman’s reproductive system containing the embryo is not.

But the end result is the same – a pregnancy is terminated. So why not at least preserve the woman’s fertility and health-promoting hormone production by administering the drug versus removing her fallopian tube?!

Another story in the cited article involved a woman with Lupus who was pregnant with a nonviable anencephalic fetus. Although continuing the pregnancy risked the woman’s health and her very life, pregnancy termination was denied.

The above situations would be considered medical malpractice since they caused harm to the patients. And what makes even less sense is that neither of these were viable pregnancies. Catholic Church dogma caused (intentional) harm to these women.

Another treatment done in Catholic hospitals that has me scratching my head is endometrial ablation. Although it reduces fertility, pregnancy can still occur but can be dangerous to mother and unborn child. So some form of birth control is recommended after ablation if tubal ligation was not also performed. Yet according to Is the Novasure System Ethical?, Novasure ablation has been given a passing grade by the Catholic Church. With the Church’s mandate against contraceptives, I wonder how many women are prescribed contraceptives to treat their heavy bleeding BEFORE this procedure is offered. However, in defense of the article, it does state that drug therapy is typically the first-line treatment after doing a full work-up to determine the cause of the bleeding. And if that fails then D&C should be the next step which should include polyp removal if polyps are found. However, it does not mention removal of fibroids despite being a common cause of abnormal bleeding. Although the article recommends starting with conservative treatments, the high rate of unwarranted hysterectomies and ablations indicate poor compliance with these standards.

According to a study published in 2008, the long-term problems caused by ablation too often lead to hysterectomy, the rate being highest (40%) for women having the procedure before age 41. This is further discussed in Endometrial Ablation – Hysterectomy Alternative or Trap?. However, again, in defense of the above cited Novasure article, it was published in 2005, three years prior to this study on the long-term effects of ablation. And, in addition to surgical risks, the article does mention the long-term risks of accumulation of blood in the uterus and the risk of impeding diagnosis of endometrial hyperplasia or cancer. Despite this 2008 study showing the long-term harm of ablation, the use of this procedure does not appear to be declining.

According to Catholic Doors,

To obtain a hysterectomy is a mortal sin.

The ruling by the Congregation for the Doctrine of the Faith stipulates that the only time a woman is morally permitted to have a hysterectomy is when the uterus is so damaged it presents an immediate threat to her health or life. [National Catholic Reported; August 12, 1994]

In general, an hysterectomy is morally justified if the removal of the uterus is necessary for grave medical reasons. It is not justified when the purpose is direct sterilization.

Therapeutic means which induce infertility are allowed (e.g., hysterectomy), if they are not specifically intended to cause infertility (e.g., the uterus is cancerous, so the preservation of life is intended). [Humanae Vitae]

Unnecessary Hysterectomy, Ethical Principles and the Hippocratic Oath

Birth control issues aside, how do all these overused gynecological procedures comply with the three ethical principles of the Catholic Church – respect for persons, beneficence, and nonmaleficence? For that matter, how do they comply with the Hippocratic Oath to “first, do no harm?” Since they cause harm, they violate the three ethical principles of the Catholic Church as well as the Hippocratic Oath. One must question if women are getting INFORMED CONSENT in any facility, religious or secular, but that is a topic for another day.

Ascension Health defines beneficence as follows:

As a middle principle, the principle of beneficence (and nonmaleficence) is the basis for certain specific moral norms (which vary depending on how one defines “goodness”). Some of the specific norms that arise from the principle of beneficence in the Catholic tradition are: 1) never deliberately kill innocent human life (which, in the medical context, must be distinguished from foregoing disproportionate means); 2) never deliberately (directly intend) harm; 3) seek the patient’s good; 4) act out of charity and justice; 5) respect the patient’s religious beliefs and value system in accord with the principle of religious freedom; 6) always seek the higher good; that is, never neglect one good except to pursue a proportionately greater or more important good; 7) never knowingly commit or approve an objectively evil action; 8) do not treat others paternalistically but help them to pursue their goals; 9) use wisdom and prudence in all things; that is, appreciate the complexity of life and make sound judgments for the good of oneself, others, and the common good.

Why is Hysterectomy So Pervasive at Catholic Hospitals?

For Catholic hospitals with accredited Graduate Medical Education (GME) programs, resident minimum surgical requirements may very well increase the rate of unwarranted hysterectomies. But that is certainly a poor excuse for removing an organ. Even so, if they can get around the GME abortion requirements for religious reasons (Catholic hospitals will not perform abortions) they should be able to do the same for hysterectomies, 98% of which do not meet the “grave medical reasons” test.

Hysterectomies and ablations (that too often lead to hysterectomy) are big business. Hysterectomies are estimated at generating $5-16 billion annually, and so revenues may be another reason Catholic hospitals prefer gynecological procedures over medical (pharmaceutical) intervention (birth control or other). Refusing to prescribe contraceptives may increase their ablation and hysterectomy business and therefore their bottom line. So the 76% of hysterectomies that don’t meet ACOG criteria may be even higher in Catholic hospitals. And the ongoing negative health effects of these procedures further contribute to the bottom line of these “health care” conglomerates.

Could profits trump Catholic doctrine on contraceptives and Catholic ethical principles when it comes to performing destructive gynecological procedures in Catholic hospitals?   

My experience certainly proves this as all my sex organs were removed for a benign ovarian cyst, certainly not a “grave medical reason.” I can say the same for many other women with whom I’ve connected since my unwarranted hysterectomy and castration. And the overuse of ablation appears to be just as rampant. This procedure is being done on women in their 20’s and 30’s, many of whom are now considering hysterectomy or have had one to get relief from the post-ablation pelvic pain.

Just as a man’s sex organs have lifelong (non-reproductive) functions, so do a woman’s. Any procedure that disrupts their normal functioning can cause permanent adverse effects. At least medications can be stopped if the side effects outweigh the benefits.

For more information on the necessity of the uterus beyond the childbearing years, watch this video.

 

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