heavy menstrual bleeding

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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Endometriosis and Heavy Menstrual Bleeding: Two Sides of the Same Molecular Coin

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For as long as I have been studying endometriosis, I have suspected that endometriosis represented a protective cascade, one that has either gone awry or was incapable of fully eliminating or adapting to an internal stressor. To me, endometriosis behaves like cancer, not the cancer of aberrant oncogenes and tumor suppressors, though they are factors, but the cancer of metabolism, of Otto Warburg and others. I think aberrant metabolism is the key to understanding endometriosis and a myriad of other disease processes, including heavy menstrual bleeding. Until recently, however, I have not had much evidence to support this hypothesis. There is a troubling paucity of research on topics related to women’s health. Of the research that exists, much of it is focused on tried and mostly untrue conventional interpretations disease. Interpretations, I would argue, that do more to serve economic or political purposes than health, but I digress.

Over the last few years, however, mitochondrial metabolism has emerged as key determinant of health or disease. Central to this work is the role of cellular hypoxia. In order for cells to function, in order for our brains to think, our hearts to pump, muscles to contract, the mitochondria, organelles within the cells, must breathe. That is, they must consume oxygen and respire. Mitochondrial oxygen consumption results in the critically important production of ATP – cellular energy. Without oxygen, no ATP. Without ATP, nothing works. Cells die. Tissues die. Organs fail. Whether and how quickly injury or death ensues is determined by a number of factors, including the totality of the oxygen deprivation, but also, the metabolic flexibility to withstand insufficient oxygenation, even at low levels. Mitochondrial metabolism can be derailed quite easily by diet, pharmaceutical and environmental chemicals, and even a sedentary lifestyle. Metabolic alterations may transpire across generations when exposures are coincident with critical periods of fetal development and even result in de novo or first generation mutations in either nDNA or mtDNA. Mitochondrial metabolism is a key determinant of health and may in fact determine whether and how oxygenation is maintained at the cellular level.

Hypoxia and the HIF Survival Cascades

Adequate oxygenation in the cell involves a system of molecular adaptations that kick into gear during periods of hypoxia and remit when oxygenation returns. These survival cascades are initiated by oxygen sensors that trigger a set of proteins called hypoxia inducible factors (HIF1α and its counterparts HIF1β, HIF2α, HIF3α). HIFs are the master regulators of oxygen homeostasis, ensuring cell survival during periods of low oxygen. So far, researchers have identified at least 100 other proteins controlled by HIFs and tasked with bringing more oxygen and fuel into the cells. HIFs activate angiogenesis (formation of new blood vessels), erythropoiesis (production of new blood cells) and iron metabolism (oxygen carriers), glucose metabolism (substrate for ATP), growth factors, and other proteins. When all else fails, the HIF system signals apoptosis, cell death. In the short term, the hypoxia cascades are brilliant in their ability to forestall anoxia and death. In the long term, however, they wreak havoc.

If you have followed the endometriosis research, most if not all of the proteins involved in maintaining and spreading endometriotic lesions are controlled by HIF proteins. I suspect they were activated by disturbed mitochondrial metabolism, either causatively or consequently. Owing to the laws of reciprocity, once hypoxia sets in, it will disturb mitochondrial metabolism further, initiating a downward spiral that becomes difficult to unwind without full consideration of mitochondrial function. Of interest, these same cascades are active in preeclampsia and other diseases of modernity. In fact, I think many of the diseases we see in western cultures, are a result of long-term, low-level, cellular hypoxia mediated by mitochondrial dysfunction.

What precipitates the hypoxia and the mitochondrial dysfunction is not clear, but here again, I have some ideas. With endometriosis I suspect there are multiple factors that coalesce to generate cell level hypoxia.  Fetal and germ cell damage of our grandmothers and mothers mitigated by environmental (here, here, here) and/or pharmaceutical toxicants combined with our own exposures are key among them. For the heavy menstrual bleeding, however, I think the origins are almost entirely environmental, and by environmental, I mean the totality of the modern environment that includes diet, pharmaceuticals, and the ever-present industrial and environmental chemicals that pervade our existence.

With endometriosis, the hypoxia cascades are hyperactive. That is, HIF proteins are more prominent and seem not to be degraded effectively, suggesting a chronic or unremitting hypoxic threat. The ever-present HIF proteins then activate the compensatory cascades discussed above, promoting endometriotic lesion growth and the invasion into healthy cells. In contrast, with heavy menstrual bleeding researchers have found lower levels of HIF proteins. On the surface, this might suggest hypoxia is not involved, but I suspect it is. I just don’t know how exactly. There are hints to suggest I am correct. The question is why are the HIF proteins lower in women who bleed more heavily and higher in women with endometriosis? Is the bleeding another mechanism to deal with an unresolved localized hypoxia; one mediated perhaps by a different hormonal milieu?

Hypoxic Spirals and Mitochondrial Metabolism

In either case, aberrant HIF tells us that mitochondrial metabolism is altered. What it does not tell us is why or how. In many regards, however, the why and how may not matter. There are so many factors capable of affecting mitochondrial metabolism that determining THE factor is all but meaningless and perhaps a fool’s errand inasmuch as mitochondrial phenotypes even with the same genotypes are rarely consistent. More often than not, mitochondrial symptoms express with tremendous variability even among family members. This owes largely to the fact that mitochondria, as the cell danger sensors, are malleable by just about everything from nutritional status to genetics to environmental exposures and anything in between. In fact, something as simple as a nutrient deficiency, even a low-level one, can induce mitochondrial hypoxia. Carried out across time, the disease processes evoked appear identical to their genetic counterparts, and can induce de novo mutations generationally, effectively blurring the once hard and fast distinctions between genetic and environmental disease processes.

High calorie malnutrition, diets high in sugars and processed foods loaded in environmental chemicals but deficient in actual nutrients induce hypoxia. Many of agricultural, industrial and medical chemicals have been linked directly to endometriosis. Generationally, the effects are compounded. Consider DDT, Dioxins, PBCs, and DES. All are genotoxic, damage mitochondria and have been linked to endometriosis. Linkages to heavy menstrual bleeding are less well known, due to a complete lack of research. However, if we consider fibroids are one the most common causes of heavy menstrual bleeding, rodent research shows clear connections between long term, low level, food exposures to glyphosate, Bt toxin, and adjuvants, the chemical cocktail found in Roundup and used on genetically modified crops, to fibroid tumor growth. I suspect the accumulation of these and other toxins are keys to understanding the cell level hypoxia associated with heavy menstrual bleeding. The fibroid, like the endometriotic implant, may represent a mechanism to sequester toxicants, or in the case of heritable damage, remediate a flaw in bioenergetics with the resulting hypoxia a side-effect that then initiates its own survival cascades – the hypoxic spiral.

Hypoxic spirals are quite easy to initiate but somewhat difficult to stop, especially when resource availability is limited because of genetic or environmental liabilities. Consider the self-perpetuating cascades in iron deficiency or anemia, common in women. Anemia induces cell level hypoxia, which induces heavy bleeding. The heavy bleeding then induces or maintains the anemia. Similarly, Lupron, a medication used for both endometriosis and fibroids causes cell level hypoxia directly by damaging the mitochondria and reducing their metabolic flexibility. Hormonal contraceptives do as well. Indeed, one could argue that since all medications and vaccines damage the mitochondria by some mechanism or another, the ability to consume oxygen is necessarily impaired by modern therapeutics for all who use these chemicals. Reproductive ailments may simply be one set of manifestations among many. This begs the question, however, if cellular hypoxia can be induced so easily, in virtually anyone, why is it that some women develop endometriosis and/or heavy menstrual bleeding and others do not. In other words, why aren’t all women plagued with these disease processes? Increasingly, they are.

Damage to female reproductive function, colloquially referred to as ‘period problems’, has become almost commonplace in modern cultures affecting some 80% of the female population. Whether the issues present as endometriosis, adenomyosis, PCOS, fibroids, heavy bleeding or other menstrual or reproductive disease processes, may not matter. The nexus of each may be indicative of cell level hypoxia with the different phenotypes contingent on the individual’s cocktail of genetic, epigenetic, and environmental exposures and resources.

Treatment Possibilities

If hypoxia lay at the root of these disease processes, to the extent that the hypoxia can be resolved affords new treatment opportunities; ones that not only tackle root causes, rather than symptoms, but may also affect the totality of the individual’s health. Hypoxia, barring obstruction, is a metabolic disturbance. Whether the origins are genetic, epigenetic or environmental, metabolism resides in the mitochondria. If we support the mitochondria, provide the mitochondria with the resources, the fuel to perform the tasks they are proscribed to perform, rather than continually damaging or blocking innate signaling pathways needed for cell survival, we may just be able to, if not eliminate these disease processes, at least manage them and improve quality of life. I think this is worth looking into, don’t you?

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Graphic credits: Tony Grist (Photographer’s own files) [CC0], via Wikimedia Commons

This article was originally published on May 9, 2017. 

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Almost Bleeding to Death Monthly Is No Way to Live

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At age 23, I woke up from an ovarian surgery to the comment, “It’s not cancer, but you have moderate endometriosis. If I were you, I’d get pregnant as soon as possible.” Having only been married for a year, and not yet stable in our financial situation, we just laughed, not really understanding what the doctor meant. And I decided to go right back onto the birth control pill.

Five years later, at age 27, on our anniversary trip we decided it was the perfect time to get off of the pill and try getting pregnant. I remember throwing the packs of pills away, excited for the future to come. Little did I know that would start a whole snowball effect that would ultimately take my health and my fertility.

A year later, I was starting to have odd symptoms. I began having massive acid reflux that was burning my voice box severely. I was quickly started on a Proton Pump Inhibitor. I was never told that it should’ve been a limited time treatment, so I continued taking them. Pretty soon, I started having issues with my menstrual cycles. I noticed that the bleeding was getting heavier and heavier and the pain was increasingly getting worse. It never occurred to me that any of that was in any way abnormal. I just figured it was part of being a woman, and I needed to suck it up.

Severe Menstrual Bleeding and Panic Attacks: Unrecognized B12 and Iron Deficiencies

On October 6th, 2006, I woke up to severe bleeding and panic attacks. My husband rushed me to the doctor where I was diagnosed with severe iron deficiency. My ferritin (stored iron) was incredibly low; almost non-existent. I was sent home with iron pills and instructions to take them once a day. Quickly my health began to decline, and many mornings I would wake up in a sweat and a full panic. I knew something was wrong but all of the tests kept coming back normal. Two years later, when my doctor retired, I received my records and immediately noticed my B12 was also extremely deficient, so I started supplementing B-vitamins on my own. I slowly gained a little energy back, and was able to function semi-normally for a while, however, I still had this underlying anxiety that I couldn’t shake.

Back on Birth Control and Still No Relief

My next option was to go back onto birth control and see if it would control the increasingly heavy and painful menstrual cycles I was having. Unfortunately now, any pill I tried, my body and my anxiety went into a major downward spiral, leading me to quickly come off of any hormone pills.  By this time, I was seeing multiple doctors. My bleeding had become very uncontrollable, and I was soon diagnosed with a fibroid. I considered Uterine Artery Embolization, but at that time my fear of losing my fertility was too prominent to go ahead and proceed with the surgery. I continued to increase my iron intake, and after lots of research, I learned a regimen that seemed to work for me. Regular lab testing showed me constantly dropping in iron and blood levels, and then recovering some, and then dropping severely again when my cycle came around. Eventually my cycles got so intense that I was having to use incontinence overnight pads instead of the regular menstrual pads. It was a nightmare. I began to get more and more bed ridden and ended up having to bring in outside help to just help me get through my day, while my husband went to work to provide for our home and my medical needs.

Dropping Blood Pressure, Skyrocketing Heart Rate: I Was Close to Dying

The day after Thanksgiving 2013, which my husband and I had spent alone due to my inability to leave the house, found me unable to get up without almost passing out. My blood pressure was incredibly low and my heart rate was more than 160 beats per minute. I brushed it off as anxiety, but my neighbor who was a paramedic’s wife came by and took one look at me and told me, “Get to the hospital RIGHT NOW!!!” My husband loaded me up into the car and we went. I wasn’t a stranger to the emergency room, but was usually sent home with the comment “take more iron” or “go see your doctor” (which I was, but evidently I wasn’t getting the monitoring or treatment I needed).

So I sat in a wheelchair in the waiting room, waiting for my turn to be called and suddenly two nurses ran out of the doors and headed for me. I looked at my mom who had joined us at the emergency room, knowing instantly this couldn’t be good. There were people who were sicker than I, throwing up all around me. The nurses grabbed my wheelchair and as they wheeled me back I heard a nurse say, “Sweetie you don’t have enough blood in your body, we need to start you on a transfusion right away.” I immediately burst into tears, looking back for my mom and my husband for reassurance. I was terrified of transfusions. I had only ever heard horrible things about them. About allergic reactions, and new diseases transmitted through them. I was absolutely terrified. Through my tears, (which I felt stupid for, because I figured I was old enough not to cry), the nurse quickly and quietly reassured me it would be ok. She said they’d start it slow and keep an eye on me for any reactions, and no, I wouldn’t contract any new diseases. She assured me that transfusions were entirely safe. The flurry of activity around me was overwhelming, and during a small break in the chaos I asked my husband to take a picture of me because I wanted to see what I looked like.

Near death with heavy bleeding

My husband hates that picture now. I think it scares him quite a bit. But I keep it in my computer files to remind me how close I came to dying that day. My skin was so pale it was almost non-existent, yet somehow I was extremely yellow. The lack of blood in my system was shutting down my organs, and I spent the next three days in the cardiac intensive monitoring ward.  During this time I received three transfusions.

Bleeding to Death Monthly with No Answers from the Doctors

When I was released from the hospital, I was sent home with more iron pills and an explanation that my stored iron (ferritin) was completely non-existent. When you bleed and don’t have the raw materials to make more blood, your blood levels drop and it can get dangerous. I had no idea that I had let it get to a point where I was so close to having a heart attack from the lack of blood in my body. My doctors apparently didn’t understand it either, as they kept sending me home with little regard for the severity of my condition.

I was determined to not let it happen again. Visits to the doctor didn’t produce any new treatment plans. Unfortunately, my doctor didn’t seem to get the severity of the situation and left me to self-manage my iron and blood levels. The next month when my cycle started, I found myself back at the ER receiving more blood since I had bled out all of the previous month’s transfusions. And so started a vicious cycle: one of receiving transfusions, and starting to be okay and gaining some life back in me, and then starting my cycle, and losing more than the transfusions had given me. For the next 5 months, it became a bi-monthly habit to visit the ER, get my blood replenished and be sent home.

Uterine Artery Embolization to Stop the Bleeding: Pain and Other Problems

Finally, in March of 2014, a new ObGyn suggested a Uterine Artery Embolization again.  It is a procedure where they go in through your femoral artery and place plastic pellets to shut off arteries to fibroids and other areas of your uterus. By this time the scans showed I had “innumerable fibroids”. Knowing that the UAE would probably remove the possibility of me ever being able to have a child naturally, my husband and I discussed the pros and cons and made the decision that I needed to have this done. Bleeding to death every month just wasn’t worth it anymore. So, a couple of weeks later I underwent the most painful surgical experience of my life. Imagine giving your uterus a heart attack, by cutting off its blood flow. The next 8 hours were a blur of holding my belly and crying and looking for my mom to help me breathe through the intense contractions that didn’t let up. The pain medicine didn’t even touch a fraction of the pain. Finally, at 12 hours the pain let up as my body learned how to reroute some blood flow to keep my uterus alive, while keeping the blood vessels to the fibroid tumors shut off. I went home to recover, believing it was done.  I was looking forward to more normal cycles and healing my missing nutrients and blood I had lost during this whole ordeal.

Unfortunately, that was not to be. Five weeks after the procedure, I began to hurt severely and ended up passing a fibroid that was 3 inches long. This sent me once again to the emergency room where the bleeding became enough to require another transfusion. I was devastated and I just started sobbing. I knew at that moment it hadn’t worked. The next 10 months were a blur of doctor appointments, firing awful doctors, and finding new ones that were going to fight for me. That started the bi-monthly appointments of iron infusions, as they figured out what to do with me. By the end of this, my veins were so messed up that it was hard to get a line in me, and the infusion/chemo nurses were talking about putting in a PICC line. I remember looking at my husband after an infusion that took three attempts to get an IV line into my body, and saying, “This isn’t worth it. I can’t keep going like this.” At that point, we realized that we would have to give in to the hysterectomy that doctors were now recommending.

Hysterectomy and Oophorectomy: From the Frying Pan to the Fire

On January 15, 2015 I went in for a laparoscopic assisted vaginal hysterectomy, believing I would come out with one, or both ovaries. I had left the decision of ovary removal up to my surgeon, who assured me that he would leave them if they were ok. The first question I asked as I woke up was, “Do I have anything left?”  The nurses refused to tell me, and once my husband was allowed to see me he shared with tears in his eyes, “They had to take everything.” Evidently the doctor had found endo and new hemorrhagic cysts on both ovaries and had decided it wasn’t worth keeping them. I was a bit concerned when I received this news, but figured menopause would just make me a bit hot and cranky. Everyone goes through menopause, so why couldn’t I?  I figured I’d slap a hormone patch on my behind and be good to go. I remember looking at my husband and saying, “It’s over. We did it!!” I now feel so incredibly stupid looking back at that statement. Little did I know, I had just jumped from the frying pan into the fire.

Oh, how I wish I had stood up for my ovaries more that day. What I didn’t know then, but know now is that the ovaries control EVERY SINGLE function in my body. And being a medication sensitive person, so far none of the hormone replacement therapies are matching or helping my body. I seem to absorb and process them differently. Post hysterectomy, we discovered I had a gene disorder called MTHFR, where my body doesn’t handle and process B vitamins correctly, which leaves my liver and system overworked without the correct supplements to help it. We also learned a year later that I should’ve been diagnosed with Polycystic Ovarian Syndrome (PCOS), but that had somehow been missed between the endo, fibroids, and bleeding to death. Had I received correct hormonal labs and evaluation and had the PCOS been caught. I might have been able to receive some specialized treatment that maybe would’ve helped. Maybe…

Two and a Half Years Post Hysterectomy

I am two and half years out from my hysterectomy. I am still working on finding a stable and suitable hormone replacement (which some days feels impossible), but I’m hanging onto a sliver of hope it can be done. There are very few guidelines for hormone replacement after a hysterectomy for MTHFR or PCOS, so I am finding the challenge more often than not,  completely overwhelming. Most days, I have symptoms that I never had before, which are keeping me bedridden. Migraines, body aches, and dizziness that keep me sidelined are the horrible consequence of taking out my ovaries and losing my hormones. As I began researching, I realized that ovary removal can be absolutely devastating to women. There are over 400 bodily functions that need those hormones to work properly, and my body wasn’t tolerating any of the pharmaceuticals that are available. There are days I wish I had never woken up from that surgery, and the isolation and loneliness of the situation I’m now in, leaves me in tears most of the time. My marriage of 17 years is still surviving, but it has taken a big hit. Intimacy is not what it once was, and the stress of caring for a chronically ill spouse can take its toll on anyone.

I Am Not Alone: The Sad Reality of Women’s Healthcare

The more I researched, the more I realized I wasn’t going through “natural” menopause. I was in something called surgical menopause, which in reality is just another word for female castration. I went searching for information and support sites for surgical menopause, but I kept coming up empty-handed. There just isn’t that much information or support available. So out of desperation and getting tired of calling the suicide hotline, I started a group on Facebook called Surgical Menopause Support. I brought about 15 people from my pre-hysterectomy group with me, so that we could talk about the struggles and hormone craziness we were dealing with, without scaring other women who were facing hysterectomies themselves.  I figured I was an exception rather than the rule. The group has now grown to over 1,100 members from all over the world, and I’ve had to add two administrators to help me oversee the group.

Women are desperate to find out what has happened to their body, and why they are feeling so sick and miserable. I was shocked; I wasn’t the exception, this is what it is. This is what happens when you remove an entire organ system from the body. There are days when my jaw just hangs open at the stories these other ladies share, or the comments they get from their doctors. It makes me so sad. Some days I am so angry at the medical community for doing this to me and other women, without the ability to put us back together. It’s probably one of the hardest things you can put a woman through. It seems to remove so much of the person she once knew. And women are in no way made aware or prepared for the challenges that could come from this surgery. It just blows my mind.

So for now, I continue to strive to find hormones that let me be the best me I can be; hoping that I will end up being more functional than I am now. I will continue to offer a supportive place for women to chat about their struggles and feelings. My goal is to somehow make the doctors and medical community more aware of what they are actually doing to women. I hope that scientific research and funding can be put in place so that researchers can figure out how to keep women from needing this surgery at all, or at least how to replace all the hormones their bodies lose. The pharmaceuticals we have now are not enough. Some women can’t handle the bioidentical hormones and need synthetic. Some women can’t handle the synthetic and need bioidentical. There are not enough options for customization for women to pick from. The medical community must think it is one size fits all for all ladies. Something needs to be done, because other women who have had these surgeries as a necessity like I did, will find themselves in a surgically induced, new medical situation, with not much support or help. It has to stop.

This article is in honor of Mary Brite, who over the years constantly encouraged me to write and share my story.

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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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In the ER … Again! Heavy Menstrual Bleeding

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heavy menstrual bleeding

“You really shouldn’t be doing this,” the ER doctor informs me. As if I have any control over my body and its screwed up menstrual cycles. As if I choose this hormonal fate. I want to punch him, but I can barely keep my eyes open to look at him while he talks. “You really need to figure out why you are bleeding so heavy, this isn’t normal.”

If I had enough energy to lift my limp head up off the hospital bed, I would point out the fallacy in his logic – this is not my responsibility. I have been in and out of ER’s and doctors’ offices since I was 18 years old from menstrual bleeding so heavy that I pass out or nearly pass out. It always seems to be more of an inconvenience than a concern for doctors. Oh they are concerned at first. But as soon as I explain my history of this problem, his concern, like all doctors, turns into annoyance. As soon as I tell them I don’t want to take oral contraceptives or any other type of artificial hormone, the concern quickly evaporates like the sweat dripping down my forehead in spite of my shivering body being wrapped up in blankets. Even after I explain my experiences on oral contraceptives (OC) and how the four times I have tried to take it to regulate my periods, I bleed like this every single month, not just occasionally, and that’s on top of the other side effects: extreme depression, weight gain, and epic mood swings that cause my boyfriend to nearly dump me (and who would blame him – I’d dump me if I had to deal with the monster I become on OC).

“Ok” is all I have the energy to muster as I close my eyes to prepare myself for the next cramp I can feel billowing in my lower abdomen. I let the pain wash over me as he continues oblivious to the pain I’m in.

“You need to follow up with your primary or gynecologist,” he tells me. “I’m going to give you progesterone to stop the bleeding…” he goes on to explain the difference between progesterone and estrogen. I don’t stop him to tell him I write for a women’s health ezine or that I’ve done enough research that I likely know more about women’s health and hormones than most general doctors.

A few minutes later my nurse, I’m tempted to start a new religion just so I can appoint her as a saint, walks in with my discharge papers. “Ok honey, I hope you feel better. I’m so happy it’s not an ectopic pregnancy or anything serious.” Throughout the day she has brought in warm blankets and shown more compassion than any doctor I have ever met. I am a problem they can’t fix. They aren’t Dr. House so they’d rather just pass me off to another doctor and move on to a more exotic problem. I’m just a noncompliant patient with hormone problems. God forbid I ask them to think outside the box and figure out what is causing this excessive bleeding. My nurse takes out the IV as careful as you can take out an IV and in a motherly tone says, “I’m glad everything came back normal, but sometimes not knowing is even worse. You go home and take it easy.” I fight back tears. Exhausted and hormonal, I want to hug this woman for her simple acts of kindness and compassion.

“This isn’t really anything new.” I tell her, even though she already knows my medical history. “It sucks, but I’m used to it now.”

“But it shouldn’t be like that,” she says. Like I said, this woman should be appointed as the saint of Emergency Departments.

On my way out of the ER, I stop by the hospital pharmacy and pick up the prescription for hormones that I won’t take. I head back to my office to explain to my male boss that everything was fine and try to make it sound serious enough not to sound like a hypochondriac. He smiles and Okays me to work from home the next day.

I go home to my very concerned boyfriend. I throw the bag with the “magic” pills on the counter and exasperated say, “they gave me IV fluid and hormones, but I’m not taking them.” Naturally, this causes a fight that I don’t have the energy to deal with…again.

Boyfriend: You need to take the medication they give you.

Me: It won’t help and it just messes my system up even more.

Boyfriend: [throws arms in the air … like he’s more exhausted than me at this point?!] You’re not a doctor.

Me: I’m going to bed.

Like every time before, the bleeding slowly lets up in the following days. I’m not a prophet, but I can tell you how this story will end: For the next few weeks, I will walk around like the living dead. I will force myself to eat in spite of having absolutely no appetite. The doctor will call to follow up. “Do you want to take birth control now?” she will ask and when I tell her no, “there’s really nothing more I can do for you at this point…” I know this is how everything will play out because history is simply repeating itself. Sadly I have learned to accept it. In another month, or six, or maybe even a year, I’ll be back in the ER and the cycle will repeat itself again. As I write this I’m so faint that I’m debating going back to the ER to test my blood levels again, but resignation is the only emotion I can muster. Not concern for my own health, but resignation that this is as good as it gets so why fight the system?

So, why do hormones matter? Why don’t hormones matter is a better question. Why is this story an acceptable fate for me and so many other women?

This article was first published on Hormones Matter in July 2013.

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Periods from Hell

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Stacey Miller

Even from the beginning, my periods have been a little off.  My first period was light but it lasted two weeks.  Some years later I had bouts of nausea and vomiting on the first day of my period. I was eighteen then and I thought God was punishing me for losing my virginity, until I realized that perhaps God had better things to worry about.

Period during Pregnancy

My period even made an appearance when I was pregnant. At about nine or ten weeks into the pregnancy, I started to bleed at work.  It was darker like at the end of a period. I panicked, as any woman would. I thought I was having a miscarriage. The emergency room could not tell me any different.  I was put on bed rest until it stopped.  It went on for two weeks and then stopped just as mysteriously as it began.  My son was born about six months later after an emergency cesarean.  Two years later, my daughter was born also by cesarean.  Perhaps those two c-sections and the tubal ligation are what caused a nightmare that lasted more than a decade.

Tubal Ligation and Heavy Periods

Soon after my tubes were tied, I began to have heavy periods.  They would last over a week.  I would seem to have to change tampons every hour and a half.  When I went to my Ob/Gyn, he put me on birth control pills to snap my hormones back in line.  It worked for a while.  I took them for about three or four months and then stopped.  My periods returned to normal length and flow for a short span of time.  Then, it would start again and I would begin the hormone roller-coaster again.  Every time I went on birth control, I had to take it longer for it to work.  I became frustrated with the fact that my tubes were tied but I was still taking (and paying) for birth control pills.  After six or seven years, my body had become immune to the pills. They no longer worked.  Worse than the heavy periods was the increasing pain.

Heavy Periods plus Searing Pain

My lower back pain stayed with me since the birth of my children, but it got worse as the years went on.  I also developed ovarian cysts and other lower pelvic pain.  I had moved and was seeing a new Ob/Gyn.  This one seemed to make it a race to see how quickly she could get me out of her office.  She didn’t listen to my family history when I told her that every woman in my family had a hysterectomy due to fibroid or endometriosis.  She would send me for ultrasounds and other tests that always came back inconclusive.  But she never attempted to find out why I was in so much pain or why I had to use two tampons just to be vertical.  Her answer was Depo-Provera.  It was a shot to stop my ovulation, and therefore, my period.  Perfect answer, she said.  My periods stopped.  My weight shot up forty pounds.  After two shots, I decided I would never take any hormones again.  So a year later my period came back worse than ever.  I lay on the bed for four days straight with back pain that made me want to punch a nun in the face.  The bleeding would be bad to normal, but it was the pain that was the unbearable.

Fighting to Be Taken Seriously

I changed doctors again.  This time, I went in prepared.  I did my research.  I knew that if it was a fibroid tumor, the scan would have picked it up.  I also knew that many of the suspected conditions could go undetected on such scans.  In fact, that was the problem.  Endometriosis and adenomyosis can go with symptoms and no real answers for years.  As I read the lists on the internet, I recognized signs that I did not even think were linked to my period.  Perhaps my back pain had nothing to do with strained muscles.  Perhaps my UTI symptoms that seemed to appear around the time of my period had more to do with my period than ill timing.

With a list of symptoms and searing pain to remind me exactly where my backbone was, I walked into the office.  I was not going to be bullied or pushed out of the office. She sent me for the same tests: ultrasound and transvaginal ultrasound.  The back pain following the exam almost made me pass out.  This was not normal, I said to myself.  One of the nurses called to try to refer me back to my primary physician.  I told her that this pain came with my period and left when it left.  This was not a primary physician issue.  It was a gynecological issue.  She scheduled another appointment and I saw another doctor that was too quick to push me out.  “The tests were normal, so I don’t know why you are here.  I thought they called you.”  She ‘there there’d’ me and handed me a brochure while she encouraged me to think about getting the inside of my uterus singed or taking something to throw me into menopause.  As I walked into the office for my next appointment, I overheard one of the nurses comment, “yeah, her ultrasound was fine. I don’t know what she’s complaining about.”  That was it.  The doctor came in like nothing was wrong so I flipped my bitch switch and let it go.  “I know this is new for you but this is old for me.  I am tired of going on and off hormones.  Every time I go off them, it is worse.  I don’t want to do ablation because 40% of women end up needing hysterectomies anyway.  I don’t want to chemically force myself into menopause.  I do not want to stick a band aid on this.  There is something wrong.  And while I may not know exactly which bleeding problem it is, I know that ablation is not a definitive answer for any of them.  I’ve had my babies.  It’s time to solve the problem and stop throwing a pill at it.”  She gave in and set up the referral for a surgeon.

Flipping the Bitch Switch

Truth is that I am not sure exactly what it is that I have.  On January 24th, I go in for surgery.  It was not a quick decision by any means.  It came after almost fifteen years of increasing pain and problems.  It came when I decided that I was not going to shut up and fill a prescription.  So please, if you are out there and still struggling with pain and periods that seem like they are in competition with Niagara Falls, find your own bitch switch and let it go.  Because despite what the medical community would rather have us believe, a person can make it all the way through med school and still be a moron.  You know your body better than anyone.  Take care of it.

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