April 2015

Soaking in Mother Nature’s Goodness: The Sunscreen Smokescreen

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Cancer is a word that strikes fear in most. We’re a society concerned with taking preventative measures to avoid getting “The Big C.”  We know to use sunscreen when outdoors and chow down on “super foods” rich in antioxidants and phytochemicals to help lower our cancer risk. The antioxidants found naturally in foods can counter free radicals that are produced in our bodies from exposure to environmental toxins and carcinogens such as tobacco smoke and radiation – except when they are covered in toxins that limit their antioxidant capabilities.

Strawberries are well known as a super food, rich in the antioxidants vitamin C, ellagic acid and flavonoids that suppress a DNA-damaging enzyme linked to lung cancer. Strawberries are 98-99% water, making them the perfect sponges for all the goodness that Mother Nature provides… that is, until Man mucks things up. The primary pesticide used on U.S. strawberry farms, methyl bromide, is highly carcinogenic and toxic to the central nervous system. Pesticides serve to protect strawberries from damage by insects, fungus, rodents and disease, but the sad truth is we would be better off eating a strawberry covered in insects than one that is literally a pesticide-soaked sponge. In some cases, the use of sunscreen is very similar to the use of pesticides on strawberries, in which the chemicals used to block the sun’s radiation, may do more harm than good. Let me explain.

The Sunscreen Smokescreen

Previously, I wrote about tanning basics and the benefits of sunscreen. I’m lucky to live in a coastal town where there is much to do outdoors; beach, hiking, taking our workouts outdoors, and leisurely drives with the top down. My fellow health fanatics and I know to use sunscreen to protect ourselves from the sun’s damaging rays, but more importantly, we know that not all sunscreens are created equal. There are some that actually contain cancer-causing ingredients, resulting in the exact scenario we’re trying so diligently to prevent… similar to our strawberry sponge. Like the strawberry we’re made up of mostly water, up to 60% in the average adult body. Like the strawberry we absorb our environment into our systems, for better or worse.

Clearing the Smokescreen

The Environmental Working Group (EWG) is the nation’s leading environmental health research and advocacy organization on a mission to provide consumers with no-fluff facts to make healthier choices. EWG offers nine surprising facts about sunscreens which we would be wise to heed. Ultimately, we just want to know which sunscreens are best for us:

Bigger isn’t always better. High sun protection factor (SPF) products tempt us to apply too little sunscreen and stay in the sun too long. The FDA has proposed prohibiting sunscreen sales with SPF values greater than 50+ as they are “inherently misleading,” but there is no current regulation that carries the force of law. According to the Skin Cancer Foundation, most sunscreens with an SPF of 15 or higher do an excellent job of protecting against UVB. It’s also important to note that SPF refers only to protection against UVB radiation (responsible for sunburns), but SPF has no bearing on UVA rays, the beast which penetrates deep skin layers. Wise consumers need to read the label for products that offer both UVA and UBV ray protection.

Grade A fail. Vitamin A is a well known antioxidant that slows skin aging, and is a common sunscreen additive. Nearly one-quarter of all sunscreens contain vitamin A (often labeled as “retinyl palmitate” or “retinol”), but studies indicate that vitamin A may speed the development of skin tumors and lesions when applied to skin in the presence of sunlight. EWG recommends that consumers avoid sunscreens, lip products and skin lotions containing vitamin A.

Disruption junction. Some sunscreen ingredients disrupt hormones and cause skin allergies. Our current choices are either chemical or mineral sunscreens:

  • Chemical sunscreens have inferior stability, penetrate the skin and may disrupt our hormone system. Benzophenone-3 is labeled as oxybenzone, a common sunscreen ingredient which penetrates the skin, is absorbed into our bloodstream and acts like estrogen in the body. In fact, it mimics estrogen even more so than bisphenol-A (BPA), a chemical found in certain plastics that has received much attention lately for its toxic effects. Oxybenzone can trigger allergic reactions, and preliminary data connect higher oxybenzone blood concentrations with significant female health issues. While the cause of endometriosis is not known, estrogen fuels this painful condition. A study published in Environmental Science & Technology in 2012 links oxybenzone to endometriosis in older women, while another 2008 study by the Centers for Disease Control and Prevention (CDC) found that women with higher oxybenzone blood levels during pregnancy had lower birth weight daughters.
  • Mineral sunscreens consist of zinc and titanium dioxide, often “micronized” or in nano-particles. Manufacturers micronized particles to help reduce or eliminate the chalky white tint that minerals leave on the skin, but this comes with a trade-off. The smaller the particles, the better the SPF protection BUT at a cost to UVA protection.

If you can breathe it in, don’t buy it. Loose powder cosmetics with sunscreen properties, intended for the face and scalp, often contain tiny particles of zinc and titanium that offer strong UV protection by sticking to the skin. The problem arises when loose powder ends up in our lungs when we breathe in loose airborne particles. The International Agency for Research on Cancer classifies inhaled titanium dioxide as “possibly carcinogenic to humans.” Current FDA over-the-counter rules prohibit loose powders to advertise an SPF or make claims of sun protection, but small companies currently have a grace period to remove powders from the market. Sprays sunscreens are popular due to their convenience, but there’s growing concern of their inhalation risk. Sprays are also hit or miss, leaving areas exposed without protection.

Say bug off to bug repellents. Sunscreen and bug repellent combos may seem like a great idea, but the risks outweigh the benefits as repellents typically contain chemicals such as DEET (also listed on labels as N, N-Diethyl-m-toluamide or N, N-Diethyl-3-Methyl benzamide). DEET is a highly effective repellent, but is also littered with health concerns ranging from topical irritations to lethargy, confusion, disorientation and mood swings. It’s also an environmental toxin that breaks down slowly in soil, with detrimental effects coursing through waterways to all living things. There are also studies that show combining sunscreen and repellents lead to increased skin absorption of the repellent ingredients, which is discouraged for health reasons.

Towelettes are for eating fried chicken. Sunscreen wipes and towelettes were prohibited in 2011 by the FDA due to concerns that there wasn’t enough sunscreen to ensure skin protection. Keep in mind that small companies have a grace period to remove them from their product lines, so just because you see something for sale doesn’t mean it’s good for you.

Tanning Oil + SPF = Oxymoron. Some tanning oils appear to be a healthy choice because they contain SPF protection; however, the SPF levels are typically low and offer no true protection. Bottom line, tanning results from cellular DNA damage which leads to skin cancer.

All that said, the sun isn’t taboo. Don’t go running from it to hide in dark shady spots. Sunlight is critical for our bodies to produce vitamin D, which is important in strengthening bones and the immune system, reducing the risk of breast, colon, kidney and ovarian cancers, and perhaps other disorders. Life is short. Enjoy it… but enjoy it wisely.

This was posted previously June 2013.

Using Lupron to Diagnose Endometriosis: Fact or Medical Fiction

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Lupron or Leuprolide is prescribed regularly for endometriosis, fibroids and undiagnosable pelvic pain. The evidence supporting its use is sketchy at best. Perhaps the most troubling practice is the use of Lupron to ‘diagnose’ endometriosis, an indication for which there is little evidence.

Can Lupron Response Indicate Endometriosis?

According to a report by the Practice Committee for Reproductive Medicine, No.

“The gonadotropin-releasing hormone (GnRH) agonist Lupron has been advocated to diagnose and treat endometriosis without performing laparoscopy, based primarily on the results of one study involving 95 women with moderate to severe chronic pelvic pain unrelated to menstruation. In this study, participants were randomized to receive depo-leuprolide 3.75 mg or placebo injection monthly for three months followed by laparoscopy. The underlying premise was that improved pain symptoms during the hypoestrogenic state induced by GnRH agonist treatment might reliably indicate that endometriosis was the cause.”

What the research found, belies the utility and subsequent marketing of using Lupron to diagnose endometriosis. Pain relief in response to Lupron was not significantly different in those who did or did not have detectable endometriosis at laparoscopy (81.8% vs. 72.7%, respectively). That means, even by the company’s own research the response to Lupron did not and could not accurately diagnose the endometriosis.

Do I Really Need Laparoscopy to Diagnose Endometriosis?

“My doctor said that if I get better on Lupron it means that I have endometriosis. He said I might as well take Lupron now and not wait for the laparoscopy.”  In other words, is the currently popular practice of using a GnRH agonist (e.g. Lupron) as a treatment for endometriosis without doing a laparoscopy first warranted? No, it is not and here’s why.

Lupron pre-laparoscopy has become common practice since the publication of a study by the drug’s manufacturer (no bias there) several years ago. The study showed that 82% of women with pelvic pain that had not responded to milder pain medications or antibiotics were shown to have endometriosis. When Lupron was given and the ovaries temporarily shut off, pain improved. However, pain was also reduced in the women who did not have endometriosis. This happens because hormones made by the ovaries influence pain perception. Therefore, if pain gets better after Lupron is given, it does not necessarily mean that the pain is due to endometriosis. Failure to understand how hormones, pain, endometriosis and Lupron interact leads to an incorrect diagnosis in at least 25% of cases. In addition, many forms of endometriosis do not respond to this drug. Its expense and high level of side effects (e.g. rapid loss of bone calcium) also make it a drug to be used with caution. Our experience is that using the drug before doing a laparoscopy most often delays, but does not eliminate, the ultimate need for laparoscopy.

Is Laparoscopy the Only Way to Diagnose Endometriosis?

Yes. Laparoscopic inspection of the pelvis is the gold standard for diagnosis of endometriosis. There is evidence in abundance qualifying the need for laparoscopic inspection to confirm the diagnosis – and effective treatment of – endometriosis. A non-invasive diagnostic test would be especially useful in the endometriosis and gynepathology community, indeed; however, despite ongoing research and development of many, many such potential tests and markers, not a single one has achieved benchmark and can be relied upon to diagnose endometriosis accurately. Moreover, medical therapy, like Lupron should not be used as evidence of a diagnosis. Medical therapy has never ‘cured the disease’.  Medical therapies like Lupron are used merely to temporarily suppress some of the symptoms associated with endometriosis; it is neither long-lasting nor wholly effective, and it is not without serious side-effects.

Are all Laparoscopic Techniques the Same?

No. You will need to find an expert in laparscopic excision for endometriosis. Meticulous laparoscopic excision (LAPEX), has significantly superior results to not only obtaining diagnosis through histological confirmation, but also to removing disease effectively while preserving healthy tissue and organs. Some specialty centers have rates as low as 7-10% recurrence in their patient populations as far as 20 years out from initial excision. The recurrence rate for ablation and vaporization, on the other hand, are very high – ranging around 40-60% within the very first year following surgery; some as high as 77% within the first 2 years. Superficial ablation and other topical removal of only obvious lesions results in disease left behind and in many cases, depositing carbon which can be painful on its own – as well as be confused for endometriosis at later surgical re-intervention [Nezhat et al.].

Of course; it goes without saying – all of this notwithstanding: what matters most is whether the patient is adequately relieved of her pain. For that, Lupron is most certainly not indicated.

Lupron Side Effects Survey

To determine the rate, range and scope of side-effects associated with Lupron use in women’s health,  Lucine Health Sciences and Hormones Matter are conducting an online survey: The Lupron Side Effects Survey. The survey is anonymous and takes only 15 minutes to complete. If you are woman who has ever been prescribed Lupron, please take a few minutes to complete the survey. Your data will give other women the information they need to make a decision about Lupron.

About the Authors: The Center for Endometriosis Care is a COEMIG-Designated Center of Excellence in Minimally Invasive Gynecologic Surgery which was founded over two decades ago by renowned laparoscopic excision (LAPEX) pioneer Robert B. Albee, Jr., MD, FACOG, ACGE.  The Center is run under the leadership of Medical Director Ken R. Sinervo, MD, FRCSC, ACGE along with a caring, compassionate staff.  We continue our efforts as architects of the legacy in gold standard endometriosis care.

Adhesions: Cause, Consequence and Collateral Damage

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Dear Dr. Wiseman,

I have been living with adhesions for over twenty years since the age of 21. After five years of period pains I was diagnosed with endometriosis and had five laparoscopic surgeries to remove it. I had relief for some while and then the pain came back. I also had adhesions, which they tried to remove, but they just came back. I don’t know what is worse – the endo or the adhesions.

At 30 I had a hysterectomy which they said would cure my endometriosis and pelvic pain. The pain only got worse and I started to have bouts of painful constipation and diarrhea which I was told was IBS. My belly was and is often bloated with a painful “pulling” sensation and severe gas.

Eight years ago my first bowel obstruction was caused by my intestine wrapping around my ovary. They tried to clean this up with surgery but I had five more obstructions and adhesions surgeries.

For about five years I have had lower back pain. Burning pain started 6 months ago when my bladder is full and when I pee, is about 14 times a day and 5 times at night. Being intimate with my husband is out of the question. My pain daily is an 8-10 and I have no quality of life. Of course the ER thinks you are a drug seeker when you come in continually for pain, but I go when I can’t tolerate anymore. I have tried hypnosis, massage therapy and acupuncture. I lost my job because I was either always taking days off because I was so tired from not sleeping, or in the bathroom. My health insurance has run out. I am taking Vicodin and Ambien.

I need to find someone who will listen to me. PLEASE, Jane

Patient Suffering

Although Jane’s email is a composite, it typifies the many we receive from patients who are at the end of their rope, having experienced some or all of these conditions: painful periods, endometriosis, generalized pelvic pain with adhesions, hysterectomy, IBS, painful bowel movements, bowel obstruction, bladder pain, lower back (sacroiliac joint) pain, painful intercourse, possibly vulvodynia and interstitial cystitis.

Many patients have endured years of suffering with confusing diagnoses. They come to us either because they are finally told they have adhesions, or after doing their own research, suspect that adhesions may be the cause of their problems.

What are Adhesions?

Adhesions are made up of scar tissue. Think of a scar as a patch repairing a punctured bike tire. The patch, or scar certainly does the job, but the tire is never the same again. Imagine being so careless with the glue that the tire is now stuck to the bike frame. This is an adhesion, an internal scar that connects organs or tissues that should not normally be connected.

Most internal organs are covered with a “non-stick” coating, but when this is damaged, organs close to one another will stick and knit together by means of reparative scar tissue.

MRI, CT or ultrasound detect adhesions only in limited circumstances.

The only way to see adhesions is by direct surgical observation. There is no blood test for adhesions.

What Causes Adhesions?

Almost any kind of trauma can induce adhesions, the most common of which is surgery. Organs can be damaged by being handled by a surgeon or surgical instruments, or by drying out in the air of an operating room or the gases used in laparoscopy. Non-surgical injuries including knife or gunshot wounds can also lead to adhesions. Endometriosis, infection (e.g. from a burst appendix), high doses of radiation, peritoneal chemotherapy or surgical sponges left behind can also cause the kind of damage leading to adhesions. Too many, too large and too tightly placed sutures cause adhesions as do many meshes used for hernia repair or organ prolapse (e.g. transvaginal or pelvic meshes).

What Problems do Adhesions Cause?

Imagine one end of your garden hose sticking to the other and you can easily see why adhesions around the intestine can cause it to twist or kink and obstruct. Infertility will result when the same thing happens to the fallopian tubes, the channels through which eggs travel from the ovary to the uterus. Sometimes they can cover the end of the fallopian tubes and prevent eggs from entering in the first place.

Adhesions make operating more dangerous and lengthy, increasing the chances of bleeding and damage to tissues. Adhesions from a prior cesarean section, will cost the newborn baby precious seconds in an emergency c-section.

Adhesions and Adhesions Related Disorder (ARD) and CAPPS

Adhesions patients with severe, long-standing disease develop what we call Adhesions Related Disorder (ARD): chronic abdominal or pelvic pain, recurrent bowel obstruction and sometimes malnutrition. With many doctors unable to provide a diagnosis, or unwilling to tackle adhesions, psychosocial issues abound from unemployment, poor insurance coverage, lack of disability benefits and alienation by friends and family who only see a malingering, drug seeker. ARD patients with bladder, pelvic, bowel, genital or sacroiliac joint pain become practically indistinguishable from those with similar constellations of symptoms arising from initial diagnoses of IC, IBS, endometriosis, etc. We call this CAPPS: Complex Abdomino-Pelvic and Pain Syndrome.

How Common are Adhesions?

Over 90% of patients having any kind of surgery may form adhesions and problems, many occur only decades later. Who develops adhesion-related problems and why is not fully understood.

The over 400,000 annual adhesion-related hospitalizations in the USA rival those for heart, hip and appendix operations with annual direct costs to the health system over $5 billion. Fully 35% of women having open gynecologic surgery will be readmitted 1.9 times in 10 years for secondary operations due to adhesions, or complicated by adhesions (Ellis et al., 1999; Lower et al., 2000). There are similar risks in laparoscopy (Lower et al., 2004) and in men also, but for a variety of reasons the problems appear to impact women more devastatingly from an economic and social perspective.

Over 2000 people die every year from intestinal obstruction due to adhesions.

Do Adhesions Cause Pain?

While patients suffering with adhesions are quite clear about whether they cause pain, within the medical community there is great debate. Much of the debate stems from a flawed study and the recognition that surgical removal (adhesiolysis) of the adhesions doesn’t always work. The lack of effective or complete pain relief after adhesion removal has led some to suggest that adhesions do not cause pain. For a full discussion about the problems with adhesion research click here. Additional considerations confusing the relationship between pain and adhesions include:

  • Adhesions can form again after surgery, so pain may return.
  • Adhesion removal may not correct scarring below the surface of affected organs or tissues. Scarring can entrap and tether nerves, preventing them sliding around in tissue as they need to during normal movement. When nerves are stretched because they are tethered, pain often results.
  • Not all adhesions cause pain. Patients may have pain, and they may also have adhesions. One may not be the cause of the other, but may be the product of the same cause.
  • Adhesions pain, may be “referred” – sometimes the pain is felt in other locations and not where the adhesions are.
  • Chronic pain is different from acute pain. The mechanisms of chronic pain are not well understood but once pain has persisted, the system goes on auto-pilot and the biochemical and nerve changes induced by long-term pain become very difficult to undo with surgery. Furthermore, because of the interconnections between the nerves in the pelvic area, where many adhesions develop, pain or disturbances in function in one organ may “spread” to other organs.
  • Bowel pain, a common symptom of adhesions patients is difficult to diagnose. In some cases, it is related to constipation from chronic opioid use. In other cases, it can be related to an adhesion caused bowel obstruction. (Bowel obstruction caused by adhesions or anything else, is an emergency often treated with surgery. If you have a history of obstruction you should identify a general surgeon to work with and plan as much as possible for these sorts of events).
  • Long term use of opioids increases the sensitivity to pain which makes slight pain feel more painful and requires more medication to alleviate. It’s a vicious cycle that is very difficult to break.

What to do about Adhesions?

Prevention is the best treatment. If the only reason for surgery is pain, whether it is adhesiolysis (cutting of adhesions), hysterectomy or placement of an electrical neurostimulator (e.g. INTERSTIM®), be sure to exhaust all non-invasive options first and be aware that there are problems with each option.

  • Adhesiolysis (surgery) has helped some patients but there is the risk of no effect or recurrence.
  • Hysterectomy, in addition to incurring some long term health risks is likely to exacerbate the problems. Although it has helped some patients with pelvic pain, evidence concerning its efficacy, is minimal (Andrews et al. 2012). See here, here and here to learn more about the long-term consequences of hysterectomy.
  • Neurostimulators carry their own number of risks and may preclude you from using non-invasive treatments like therapeutic ultrasound.

There are no easy answers and there is no magic wand. We advocate a multidisciplinary approach. Start with a gynecologist, urologist or urogynecologist that specializes in pelvic pain and who works closely with a general surgeon and a physical therapist specializing in pelvic pain/pelvic floor dysfunction and visceral manipulation (e.g. the Barral method). The team should also include a pain management doctor, psychologist, gastroenterologist, and a dietician/nutritionist. Pain or other difficulty with intimacy is common – do not be ashamed of talking about this, preferably with someone who specializes in sexual medicine.

Many patients have been able to achieve some relief and avoid surgery with pelvic floor physical therapy and/or visceral manipulation, careful control of diet, well placed and timed nerve blocks (e.g. pudendal nerve) and judicious use of opioids. We have found that a wearable therapeutic ultrasound device has brought relief to patients suffering with adhesions and other painful pelvic, bladder and genital symptoms (Wiseman and Petree, 2012).

If Surgery is the Only Option

If you must resort to surgery, insist that the surgeon uses powderless gloves and humidifies and warms the laparoscopy gases using a device called INSUFLOW®. Insist that an adhesion barrier be used where possible. Think of an adhesion barrier is a degradable type of “internal Band-Aid” that is placed over organs at risk of forming adhesions. Once the tissue has healed, the barrier dissolves because it is no longer needed. Adhesion barriers are not 100% effective and cannot be used in all situations. There are three approved in the USA – INTERCEED® Absorbable Adhesion Barrier, Seprafilm® Adhesion Barrier, and ADEPT® Adhesion Reduction Solution, the last of which appears to have limited utility. Other materials are used “off-label” which you can read about here.

Whether your adhesions are the cause of the pain, the consequence of pain or just happen to be there, you are still in pain and you are suffering. Educate yourself and those close to you about adhesions. The International Adhesions Society and the International Society for Complex Abdomino-Pelvic & Pain Society (ISCAPPS) provide the most up-to-date information on these conditions. We’ve also found these books to be useful:

Stay active as much as possible. Walk, garden, and exercise lightly. Stop smoking. Watch old funny movies. As difficult as it may be, it is important that you maintain a circle of family and friends, through a religious community or other group.

Above all, remember you are not alone and this is not in your head.

The information provided here is not intended nor is implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.

References

Andrews J et al: Noncyclic Chronic Pelvic Pain Therapies for Women: Comparative Effectiveness. AHRQ Comparative Effectiveness Reviews 41. 2012 Jan; 11(12):EHC088-EF. http://www.ncbi.nlm.nih.gov/pubmed/22439157

Ellis H et al. Adhesion-related hospital readmissions after abdominal and pelvic surgery: a retrospective cohort study Lancet 1999; 353:1476. http://www.ncbi.nlm.nih.gov/pubmed/10232313

Lower AM et al. The impact of adhesions on hospital readmissions over ten years after 8849 open gynaecological operations: an assessment from the Surgical and Clinical Adhesions Research Study. Br J Ob Gyn. 2000; 107:855. http://www.ncbi.nlm.nih.gov/pubmed/10901556

Lower AM et al. Adhesion-related readmissions following gynaecological laparoscopy or laparotomy in Scotland: an epidemiological study of 24 046 patients. Hum Reprod. 2004; 19:1877 http://www.ncbi.nlm.nih.gov/pubmed/15178659

Wiseman, D. M. Disorders of adhesions or adhesion-related disorder: monolithic entities or part of something bigger–CAPPS? Semin Reprod Med. 2008; 26:356. http://adhesions.org/Wiseman2008SeminreprodMed26p356CAPPS.pdf

Wiseman, DM and Petree, T. Reduction of chronic abdominal and pelvic pain, urological and GI symptoms using a wearable device delivering low frequency ultrasound. International Pelvic Pain Society; Chicago, IL. 2012. http://www.kevmed.com/resources/Wiseman2012-IPPSMeetingChicagoPainShieldCPP-Thumb.png

 

This post was published previously July 2013. 

When Should Teens Go to the Gynecologist?

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When should girls start going to the gynecologist? The general consensus from the medical community and public health education is that a girl need not see a gynecologist until she becomes sexually active..I disagree.

Reproductive Care Should Begin with the First Period

Consider this; the average age of menarche in the United States is a little above 12 years of age. The average age a woman loses her virginity in the United States is 17. Based on what is taught in health class, that leaves 5 years of no reproductive care for the average American female. Although the average teenager may not need annual visits to the gynecologist, reproductive care should not be ignored. This means pediatricians must be better informed about gynecological care.

Just because a young girl is not sexually active does not mean her reproductive system does not exist. Amenorrhea, dysmenorrhea, endometriosis, polycystic ovarian syndrome and menorrhagia are all terms (or concepts) that young girls of reproductive age should be familiar with; and yet a majority of girls of reproductive age would not be able to identify any of these terms.

Abnormal Periods are a Sign of Trouble

Young girls should be taught that abnormal periods, painful periods (dysmenorrhea), an absence of periods (amenorrhea), or extremely heavy periods (menorrhagia) are not normal and should be evaluated by a doctor. In many cases, finding the causes of abnormalities in menstruation early on, could prevent further complications down the road.

Most women who have uterine or menstrual abnormalities do not get a diagnosis or proper treatment until they discover they cannot conceive. That is because by the time these women go to the gynecologist for the first time they have been lead to believe that abnormal is their normal.

My Story

When I was twelve I was getting my period every other week and I was told that was normal and that every girls’ period takes some time to regulate – which is true.  However, it wasn’t true for me. I had endometriosis and uterine didelphys (two uteri) which required surgery, but because I was young, it was two and a half years before my painful periods were taken seriously. This is an all-too-common experience. Many women report suffering for decades.

In the case where a young girl’s menstrual problems are impacting her daily life – isn’t it better to be safe, rather than sorry? Read my full health story here.

The Need for Pediatric Gynecologists

Pediatricians and family doctors alike need to sit down with their female patients and have a detailed discussion about menstruation. No one should assume that health education in secondary schools is adequate to teach a young girl to stand up for her own reproductive care. The stigma of being too young (or not yet sexually active) to go see the gynecologist should be disregarded. Regardless of age, if any other part of the body wasn’t working one would go to the doctor to get it looked at; the same should go for the reproductive system.

How old were you at your first gynecologist appointment? When did your menstrual problems begin?

Hurt by a Generic Drug? Victims have no Recourse unless the FDA Changes Rules

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On Friday March 27, 2015 I testified before the U.S. Food and Drug Administration (FDA) asking them to change a rule that currently prohibits manufacturers of generic drugs from updating the warning labels for the drugs that they make.

Why, you may wonder, should anyone care whether or not generic drug manufacturers are able to update their warning labels?

EVERYONE should care about this issue because as long as generic drug manufacturers are unable to update drug warning labels, NO ONE who is hurt by a generic drug has any recourse against generic drug manufacturers, no matter how badly one is hurt by a generic drug. In 2013 the U.S. Supreme Court decided that, because generic drug manufacturers are required to copy the brand-name drug warning label, they cannot be held responsible for any harm done by the generic drug. People hurt by generic drugs didn’t take a name-brand drug, so they cannot sue the name-brand drug manufacturers.  This leaves people hurt by generic drugs unable to hold anyone responsible for the damage done by generic drugs, and people are left without any legal recourse.

IF YOU ARE HURT BY A GENERIC DRUG, YOU CANNOT SUE.  YOU HAVE NO RECOURSE WHATSOEVER.

This is appalling. More than 80% of the prescription drugs dispensed in America are generic. Everyone who takes a generic drug is unable to gain any sort of legal compensation, any sort of justice, when injuries are caused by those drugs. Think about that next time you take a generic drug.

Or, better yet, think about the following people, who also testified to the FDA about the harm caused by generic drugs, who are unable to gain any sort of justice or compensation for their losses.  Their stories could be your story, or your child’s story, or your parent’s story.

Fluoxetine (Prozac) and Cardiac Malformations

Emily, a 29 year old who was taking fluoxetine, generic Prozac, throughout her pregnancy, gave birth to a baby boy who had a serious heart defect.  Her son died when he was 2 weeks old.  In 2011, Eli Lilly, the manufacturer of Prozac, admitted that, “there is some evidence of a possible small increase in the risk of cardiac malformations (eg ventricular and septal defects) associated with use of fluoxetine” (source). If Emily had taken Prozac, she would have been able to sue Eli Lilly, and possibly gain some sort of compensation for her losses. However, Emily took generic fluoxetine, so she has no recourse, no possibility of compensation, and no justice.

Metoclopramide (Reglan) and Tardive Dyskinesia

Anthony testified about his partner of 40 years who is suffering from severe tardive dyskinesia after taking metoclopramide, generic Reglan, for 11 years. Anthony’s partner can no longer speak or function independently. He is 100% dependent on Anthony for his care. “Tardive dyskinesia typically affects someone’s face, often causing uncontrolled grimaces and movement in the eyes, lips, tongue and jaw. Arms, fingers, toes, legs, hips and torso are also affected and may twitch and move rapidly and uncontrollably. These random body movements can be uncomfortable and painful as well as embarrassing and difficult to control, making it a social handicap. Severe cases of this disorder can be debilitating and make it difficult to perform simple tasks like talking, walking and eating.” (source)  Because generic metoclopramide is what caused harm, neither Anthony nor his partner have any possibility of legal recourse.

Birth Control and Blood Clots

Taylor suffered from life-threatening blood clots at the age of 14 after taking generic birth-control pills. She is now 17 and suffers from permanent health complications because of the blood clots.

Levofloxacin (Levaquin), Tendon Ruptures, Neuropathy and More

Rachel spoke about how levofloxacin, generic Levaquin, caused her to have multiple tendon ruptures, and contributed to her developing a neurodegenerative condition called neurosarcoidosis. In addition to losing her health, Rachel “can no longer afford my home because of increasingly skyrocketing medical expenses and surgeries and I was forced to move. I lost my career that I loved with immeasurable passion and lost good income.”  She has no legal recourse because she took generic levofloxacin.

I testified about how Heather was hurt by ciprofloxacin, generic Cipro, and moxifloxacin, generic Avelox. After taking ciprofloxacin and moxifloxacin, Heather suffered from severe nerve pain, central nervous system issues such as panic attacks and brain fog. She had blood sugar regulation problems, irregular heartbeats and more. She lost her career as a massage therapist and had to declare bankruptcy. Her life was devastated because of her severe adverse reaction to these drugs. She is unable to sue the manufacturers of the drugs that hurt her though, because she took the generic versions of the drugs.

I also testified about how Sarah reported this about the effects of ciprofloxacin on her life, “Still suffering and disabled; can’t work, lost profession, lost financial security, lost marriage, lost hope for any reasonable quality of life. Denied by medical profession due to no known diagnostic biomarkers; denied legal recourse due to generic; denied SSDI due to the first two and denial by the FDA and everyone involved, and ultimately, will be denied as the most probable cause of my death.”

Clinoril (Sulindac) and Stevens-Johnson Syndrome

There are many more cases of death and injury caused by generic drugs. Clinoril, generic Sulindac, can cause horrific injuries, such as those suffered by Karen Bartlett, “who lost nearly two-thirds of her skin, was placed in a medically induced coma and is legally blind after suffering a reaction to the medication she took for a sore shoulder” (source). Over-the-counter pain relief pills and antibiotics can cause Stevens-Johnson Syndrome, a severe and life-threatening skin condition in which cell death causes the epidermis to separate from the dermis.

Acetaminphen, Ergotamine, Montelukast and More

Acetaminophen can cause liver injuries that can lead to death. Ergotamine, a drug used to treat migraine headaches, when administered improperly, can cause gangrene and loss of limbs. Montelukast, generic Singulair, can cause Churg–Strauss syndrome, rare form of eosinophilic vasculitis associated with asthma.  There are hundreds of other examples of damage that can be caused by drugs.

Adverse Reactions and Generic Drugs – The FDA’s Role

Generic drugs are just as dangerous as name-brand drugs. Those who are hurt by drugs deserve recourse and compensation for their losses. To arbitrarily take away a person’s opportunity for justice, simply because he or she took a generic drug, is ridiculous and wrong. Currently, there is no justice for people who suffer from adverse effects of generic drugs. DO NOT take a generic drug until this situation changes.

The FDA can nullify the Supreme Court’s ruling, and enable those who are hurt by generic drugs to gain justice, simply by changing their rules so that generic drug manufacturers can update their warning labels just like name-brand drug manufacturers can.  I hope they do so.  I encouraged them to do so in my testimony.

The generic drug manufacturers are arguing that it would be onerous and costly for them to update the warning labels. Seeing as even generic drug manufacturers have billions in profits, that argument seems a bit shallow and disingenuous. The pharmaceutical industry as a whole has proposed to stop the discrepancy in justice between generic and name-brand drug manufacturers by making name-brand drug manufacturers equally inculpable for damage done by their drugs as generic drug manufacturers currently are.  If the FDA “fixes” this situation by making all drug manufacturers unable to update their warning labels and therefore exempt from lawsuits, no victim of a pharmaceutical will have any legal recourse against the companies that hurt them, and a vital check on the power of the pharmaceutical industry will be lost.

I hope that the FDA does the right thing, and closes this loophole that is keeping millions of victims of pharmaceuticals from getting justice.

The FDA testimony can be viewed through these links:

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.

Hormones MatterTM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

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Fluoroquinolones 101 – Antibiotics to Avoid

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Fluoroquinolone antibiotics, Cipro, Levaquin, Avelox, etc. are broad-spectrum antibiotics used to treat a variety of infections, from urinary tract infections to anthrax and everything in between.  The first quinolone created was Nalidixic Acid which was discovered by George Lesher in 1962.  (Nalidixic Acid was added to the OEHHA prop 65 list of carcinogens in 1998.) Cipro (ciprofloxacin) is a second generation fluoroquinolone patented in 1983 by Bayer, Levaquin (levofloxacin) is a third generation fluroquinolone  patented in 1987 by Ortho-McNeil-Janssen (a division of Johnson & Johnson), and Avelox (moxifloxacin) is a fourth generation fluoroquinolone patented in 1991 by Bayer.

Fluoroquinolone Antibiotics – Still on the Market

Of the 30 quinolones that have made it to market since the 1980s, all but 6 have either been removed from the US market or have severely restricted use.

The fluoroquinolone antibiotics that are still on the market are some of the most commonly prescribed antibiotics. Per the FDA, “Approximately 23.1 million unique patients received a dispensed prescription for an oral fluoroquinolone product from outpatient retail pharmacies during 2011,” and “Within the hospital setting, there were approximately 3.8 million unique patients billed for an injectable fluoroquinolone product during 2011.”

When used properly, such as in cases of life-threatening hospital acquired pneumonia, fluroquinolone antibiotics can save lives.

Fluoroquinolone Antibiotic Side-Effects and Adverse Reactions

When used improperly, fluoroquinolone antibiotics can needlessly cause devastating side-effects.  Devastating side-effects can also occur when fluoroquinolone antibiotics are used properly, but the devastation can be justified by weighing it against the alternative – death.  In 2001, Dr. Jay S. Cohen published an article on the severe and often disabling reactions some people sustained  as a result of taking a fluoroquinolone antibiotic.  Dr. Cohen says,

“It is difficult to describe the severity of these reactions. They are devastating. Many of the people in my study were healthy before their reactions. Some were high intensity athletes. Suddenly they were disabled, in terrible pain, unable to work, walk, or sleep.”

Dr. Cohen’s study of 45 subjects suffering from Fluoroquinolone Toxicity Syndrome, a name that I’m pushing for, (without an official name, it is difficult get the word out) showed that they had the following symptoms:

  • Peripheral Nervous System: Tingling, numbness, prickling, burning pain, pins/needles sensation, electrical or shooting pain, skin crawling, sensation, hyperesthesia, hypoesthesia, allodynia (sensitivity to touch) numbness, weakness, twitching, tremors, spasms.
  • Central Nervous System: Dizziness, malaise, weakness, impaired coordination, nightmares, insomnia, headaches, agitation, anxiety, panic attacks, disorientation, impaired concentration or memory, confusion, depersonalization, hallucinations, psychoses.
  • Musculoskeletal: Muscle pain, weakness, soreness, joint swelling, pain, tendon pain, ruptures.
  • Special Senses: Diminished or altered visual, olfactory, auditory functioning, tinnitus (ringing in the ears).
  • Cardiovascular: Tachycardia, shortness of breath, hypertension, palpitations, chest pain.
  • Skin: Rash, swelling, hair loss, sweating, intolerance to heat and\or cold.
  • Gastrointestinal: Nausea, vomiting, diarrhea, abdominal pain.

When a fluoroquinolone antibiotic triggers a toxic reaction in a person, multiple symptoms are often experienced. I experienced all of the symptoms that are italicized.

Fluoroquinolone Antibiotic Damage – Technical Aspects

Fluoroquinolones are eukaryotic DNA gyrase and topoisomerase inhibitors very similar to many antineoplastic agents (source).  What this means in plain English is that these drugs work the same way as chemotherapeutic drugs; they disrupt DNA and lead to destruction of cells.  A recent (2013) study conducted by a team of scientists at the Wyss Institute for Biologically Inspired Engineering at Harvard University Studies showed that Ciprofloxacin, along with a couple of other non-fluoroquinolone antibiotics, causes oxidative stress and mitochondrial malfunction. A 2011 study published in the Journal of Young Pharmacists found that, “There is significant and gradual elevation of lipid peroxide levels in patients on ciprofloxacin and levofloxacin.”  They also found that “There was substantial depletion in both SOD (superoxide dismutase, “a free radical scavenging enzyme”) and glutathione levels” and that “On the 5th day of treatment, plasma antioxidant status decreased by 77.6%, 50.5% (and) 7.56% for ciprofloxacin, levofloxacin and gatifloxacin respectively.” The study also notes that administration of fluoroquinolones leads to a marked increase in the formation of Reactive Oxygen Species (ROS) and that “reactive free radicals overwhelms the antioxidant defence, lipid peroxidation of the cell membrane occurs. This causes disturbances in cell integrity leading to cell damage/death.”

How Many People are at Risk?

The exact rate of adverse reactions to fluoroquinolones is difficult to determine.  Studies of adverse reactions to fluoroquinolones have noted that, “During clinical trials, the overall frequencies of adverse effects associated with (fluoroquinolones) to vary between 4.4 and 20%.”  Just the fact that the spread is so large, a 15.6% spread in frequency of adverse reactions is a HUGE difference, implies that the actual occurrence of adverse reactions is difficult to establish or unknown.

With the FDA figures above noting that 26.9 million unique patients were given fluoroquinolones in 2011, if you just take the conservative adverse reaction figure of 4.4%, you’ll get a horrifying number of people with adverse reactions in 2011 alone – 1,183,600 people.  20% of 26.9 million is 5,380,000 people adversely effected.  That is scary.  Those numbers are truly frightening given the severity of the adverse effects described above.

Fluoroquinolone Toxicity Syndrome

I see fluoroquinolone toxicity everywhere, and even I think that those numbers are high for severe, disabling reactions like mine where multiple symptoms develop simultaneously.  Not everyone who has an adverse reaction to a fluoroquinolone has a reaction like mine, or even develops Fluoroquinolone Toxicity Syndrome – thank God.  Many people have milder reactions.  Milder symptoms include any one of the symptoms listed above as well as  diarrhea, vomiting, mild tendonitis, decreased energy, painless muscle twitches, memory loss, urgency of urination, or any number of reactions that the body may have to a massive depletion of antioxidants and increases in lipid peroxide levels and reactive oxygen species production.

Even though severe adverse reactions to fluoroquinolones antibiotics can be painful and disabling for years, many (possibly most, but certainly not all) people recover from Fluoroquinolone Toxicity Syndrome with time.  I anticipate that I will be fully recovered 2 years after my reaction started. Sadly, there are some people who don’t recover.  They suffer from chronic pain, disability, impaired cognitive abilities, etc. permanently.

It is absurd, to say the least, that an acute problem, an infection, that can easily be taken care of with administration of an antibiotic that is not a fluoroquinolone, is converted into a chronic problem, a  syndrome that can disable a person for years, by a prescription ANTIBIOTIC, used as prescribed. In my case, a urinary tract infection that could have likely been taken care of with macrobid or even cranberry juice and d-mannos, was treated with Cipro which left me unable to do many physical and mental tasks that I had previously been able to do with ease. It’s a crazy, absurd situation.  It’s absurd and it’s wrong.

Some Antibiotics are More Dangerous than Others

The bottom line is that these popularly prescribed antibiotics are dangerous drugs that have caused thousands of people to suffer with a myriad of maladies. Undeniably, they have their place, in treating life-threatening infections.  Unfortunately, they are not being reserved for use in life-threatening situations and people are being hurt after taking them for simple sinus, urinary tract, bronchial and prostate infections. A strict and rigorous protocol needs to be established to limit the damage that they cause; because it’s not right to maim and disable people to treat their sinus infections.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

This article was published previously in August 2013 and is being re-posted in light of the recent press coverage warning of fluoroquinolone dangers.

Most Medical Treatments have Limited Evidence

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The journal Clinical Evidence, a project of the British Medical Journal, reports that at least 50% of common therapeutic interventions are completely unproven – meaning neither doctors nor researchers have any idea if they work or not. Worse yet, only 35% of treatments are known to be beneficial (11%) or likely beneficial (24%).

Recall, a few years ago the journal Obstetrics and Gynecology published a story reporting that only 30% of Ob/Gyn clinical practice guidelines were evidence based. When combined with the flurry of recent data on publication bias, fraud in scientific publishing and a more recent report that the Majority of Landmark Cancer Studies cannot be Replicated (to be clear, this study is paywalled and we can only access the abstract), the evidence base, in supposedly evidence-based practices, is crumbling quickly.

To address the lack of evidence the clinical practice, Congress authorized the Patient Centered Outcomes Research Institute (PCORI) along side the Affordable Care Act. Per their website, PCORIs mandate is:

to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI’s research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options.

A laudable goal to be sure, bringing patients to the table in medical decision-making and research is long overdue. However, given the breadth and depth of the lack of evidence and the astronomical costs of adverse events and poor medical outcomes, educating patients about non-evidence based therapeutic options or comparing treatment A to treatment B as seems to be the focus, might not be enough to solve this problem. And given the billions of dollars at stake in pharmaceutical sales, it seems unlikely that bringing patients to the table will have any impact on product safety.

Indeed, if product pharmaceutical marketing is any indication about the direction the industry continues to pursue, it is clear that product safety and efficacy concerns are minimal at best.

John Oliver’s: Marketing to Doctors

Beyond the shenanigans on the front lines of pharmaceutical marketing noted by John Oliver, everything from the initial research (and definitions of the disease itself), peer review and publicationthrough FDA approval, CDC and other agency marketing, to the clinical guidelines to which physicians must practice, is influenced by pharmaceutical industry funding that sways evidence favorably. So much so, that recent reports have suggested there most medical research is utterly flawed.

A Life Journey to Wellness – With Chronic Pain and Fatigue

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Today much is made of being healthy, of the importance of health and wellness. I have always been “healthy” – I still am technically, even with my chronic pain and fatigue conditions. But through the years I have come to think of health as my Doctor does, as things like a healthy lifestyle with good food and regular exercise, a healthy weight, good blood pressure, normal lab work. I have those things. When I think of “wellness” I think more of my “well being” instead of whether or not I am feeling good at the moment – because for the past 15 years I have had pain and fatigue and other symptoms every single day. In fact, I haven’t had a day without joint pain since my second Lupron shot back in 2001 – but more on that below.

But I have had a few pain free hours, and with “skills and pills” (as my Chronic Pain psychologist used to say) I can get my pain and discomfort to fade into the background for a while most days. I have learned that I can feel good about feeling bad – well, or to at least be “okay” with it. I have also applied all my skills as a research scientist (in Ecosystem Ecology) to my own medical condition. This has given me a sense of power and control over the uncontrollable nature of the symptoms caused by my chronic conditions (I have several) – but all were eventually eclipsed  by the diagnosis as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS – also known as ME/CFS/SEID etc…). Whether they are caused by hormonal, mitochondrial, nervous or immune system related problems (probably all of the above), does not really matter in my day-to-day management of my symptoms, since there currently are no treatments. I manage my symptoms by eating healthy, walking and doing yoga for exercise, making sure I get good sleep, and pacing my activity and rest.  I am able to be active at a slower, relaxed pace. I am working hard to be as “healthy” as I can be, treat my symptoms individually, and I try to focus on my wellness and well being. Our bodies are amazing things, and though I have felt for years than mine let me down, I have discovered that in reality it is a complex and amazing thing.  Even with genetic predispositions and chemical assaults, I am trying to support my body so that it has the best chance to heal itself, and I am getting better.

For those who want the details of my predisposing conditions and my healthy journey with endometriosis, Lupron and CFIDS, here is a more or less chronological account:

Pre-disposing Conditions

As a baby I often had allergies with earaches and fevers.  This was considered normal. When it is actually a sign the immune system is kicking into action for things in the environment that “should be” normal. For me they were an allergen.

In elementary school my knees and ankles hurt, and all my joints were “funny” – in that they bent back farther than everyone else’s, which was entertaining on the playground.  The Pediatrician said this was nothing to worry about and these were “just growing pains.” He suggested my parents have me take ice skating lessons to strengthen my ankles. In fact, 35 years later I was diagnosed with benign hypermobile joint syndrome, a condition which causes joint pain, inflammation and other symptoms.

We are Born with Endometriosis

At age 12, with my first menstrual cycle I had horrible cramping pain.  I was told “this is normal for some girls” and given a hot water bottle and told to take Midol®.  I knew this was not “normal” but no one could tell me why I felt this way when my girlfriends did not.  My mom understood and taught me coping skills so that the pain would not stop me from enjoying life.  Each month the pain worsened. I can recall my major life events in my teens and twenties by whether (or not) I was on my period and in terrible pain. By my mid-twenties I had to miss a day of school or work a month to manage the pain. I was prescribed Motrin® and birth control pills to manage my cycles. Over time pre-menstrual symptoms began, so I had pain and discomfort before and during my periods. It felt like I was just recovering from one cycle, and could enjoy  one pain-free week, and then PMS would begin the cycle all over again.  My doctors were sympathetic but really could not do much for me. They offered birth control to help control my cycles.  I started with low-dose pills, which would help for a while, but as pain and heavy bleeding would return they would move to a stronger pill.  In my late 20s a diagnostic laparoscopy confirmed I had endometriosis and fibroid tumors.  It explained all I had been experiencing since age 12.  I felt vindicated that I had been going through was NOT normal. But all they could do was recommend I go off birth control, so that my husband and I could try to have a baby as quickly as possible. I stopped taking birth control, knowing my abdominal pain would get worse, but we hoped to let nature take its course on the timing of a baby.

Odd Mono-like Viruses

During the 1980s, in my 20s, in college as an undergrad and after periods of high stress (such as finals), I had several multi-week episodes of fatigue, sore throat, swollen glands, flu-like symptoms.  I was always tested for Mono (which always came back negative) and was always told I “had a virus.”  I always bounced back from these, and went back to my worsening month-to-month endometriosis symptoms.

Hypothyroid Hormone Crash

I was in Graduate School in the 1990s, in my 30s, and having the time of my life doing research I loved and advancing my career.  However, after the high stress of prepping for and passing my PhD oral exams in 1994 I crashed, as “everyone does,” but this time I didn’t bounce back. I was beyond tired with a new the bone crushing fatigue (I attributed the many other vague symptoms to my endometriosis).  I guessed I might be anemic from my heavy bleeding during my periods, but my blood work showed a high TSH level, indicating, that at age 35, I was hypothyroid.

As most do, my doctor prescribed Synthroid® which restored about 80% energy, but my endometriosis was worsening with menstrual migraines and month long pain. One lesson I learned was not to assume that all my symptoms were related to my endometriosis, although the hypothyroidism had almost certainly made my endometriosis and infertility worse. By the end 1997, since I already had secured a good career position, so that when I filed my dissertation my inability to get pregnant and my endometriosis were my primary concerns.

Infertility Treatment Treats Endometriosis

When I was unable to conceive and wanted to get pregnant, I was referred to a Reproductive Endocrinologist. He did extensive testing, followed by extensive surgery to remove numerous marble sized fibroid tumors and patches of endometriosis (treatment that, at least in the 1990s, was not offered to me unless I wanted to have a baby). What followed was three years of infertility (IF) treatments, with  repeated cycles that included my doctor balancing my hormones, then giving me stimulating hormones to grow eggs, followed by interuterine insemination. I knew the IF  process would caused the endometriosis and fibroids to regrow, and two more laparoscopic surgeries were needed to remove them again, as well as scar tissue caused by the previous surgeries, to give me the best chance to conceive. We were not successful, but at least had no regrets for not having tried.

Lupron Treatment

However, I was left with worsening abdominal pain from endometriosis and fibroids stimulated by the fertility drugs, and very difficult choices to make regarding treatment.  I considered hysterectomy but I really wanted to avoid it because of my scar tissue issues, and because I wanted to keep my ovaries. I researched Lupron and knew there were risks.  What I didn’t know was that I had pre-disposing conditions that made it riskier for me and more likely I would have a bad reaction. We were more concerned about scar tissue causing lifelong abdominal pain if I had more surgery. Lupron seemed like the conservative choice to shut down the endometriosis and shrink the fibroids. I was told the treatment would be six monthly Lupron Depot injections. I insisted on, and my doctor agreed to, low dose hormone add-back therapy (estradiol and progesterone, prescribed separately) to minimize side effects.

With my first Lupron depot monthly injection (in Dec 2000), I had the expected mild menopausal side effects. The second injection the following month added severe joint pain in all paired joints to the hot flashes and other symptoms, but in addition, my abdominal pain went down!  I was told that the joint pain should go away after about 6 weeks, but unfortunately, it did not. By the end of Lupron treatment my abdominal pain was reduced by half (and was considered a success) but my Doctor recommended we stop treatment after 5 injections due to the joint pain. I was assured the joint pain should stop with the treatments. In fact, it has never gone away. Eventually, I was referred to a rheumatologist. I reported my negative experience with Lupron to the adverse drug events sections of the FDA.

Post Lupron Joint Pain

My doctor recommended that I take the birth control Depo Provera to try to maintain the “Lupron gains.”  This was mid 2001, and it worked for a while, before the abdominal pain and bleeding slowly returned, and then worsened.  During this time, I still thought the endometriosis, hormones and abdominal pain caused the fatigue, nausea, and unwellness I was experiencing. Between my primary care doctor and my rheumatologist, they were treating my individual symptoms and watching me become more symptomatic. By  2002 my joint and abdominal pain was so bad I was on 8 vicodin a day and high dose ibuprofin.

Chronic Pain Clinic – “Skills and Pills”

I was referred to a chronic pain clinic (CPC) to receive better prescription pain management and cognitive behavioral therapy which helped me to learn coping skills like mindfulness meditation, self-hypnosis, and other skills in order to “feel better about feeling bad.”  Thanks to the “Skills and Pills” of the two year Chronic Pain Clinic program, my pain was now  under better control. I was still working fulltime, but more and more days from home a few days a week now as the fatigue, brain fog, headaches, flu-like symptoms all worsened along with the ab pain.

Minimally Invasive LAVH-BSO

At this point, I am still thinking all the fatigue and other symptoms are primarily from endometriosis pain, and that Lupron triggered the arthtitis due to HMJS. My rheumatologist blamed the Lupron for triggering it all (still does). My primary care doctor, rheumatologist and Pain Doctor all witnessed my decline.  By the Fall of 2003, I was bleeding so badly I sought  a referral for a minimally invasive GYN for an LAVH-BSO. To manage the endo, it was agreed the ovaries had to go. He did a great job. I have only very mild discomfort around my bikini scar – otherwise no further ab pain at all. I went on Vivelle Dot patch immediately. Minimal menopause symptoms at age 44.

Diagnosed with CFIDS

The Joint pain continued and the rest of the ME/CFS symptoms intensified through 2004-2005…I was struggling to keep working 3/4 time with “reasonable accommodations”, getting sicker and taking FMLA because I was out of sick leave. I was working so hard trying to keep working. Finally, an endocrinologist in 2005 said I met all the criteria for CFIDS (and told me it was ridiculous to blame the Lupron…she was wrong). My pain was managable but not the fatigue. I took the Bruce Campbell course in managing ME/CFS and added “Pacing” to my list of skills. By late 2006, I was facing medical retirement after 22 years and by June 2007 I was out on Federal Disability Retirement at age 48.

Thanks to my Kaiser Doctor’s observing my decline and my own ability to write, I was awarded SSDI on first appeal in 2008. Technically it is for chronic pain but really it was the fatigue, flu-like symptoms and brain fog that kept me from working. And still today keeps me from being as active as I once was.

Living Well with CFIDS

These days I have to sleep 8-10 hours per night. I used to take daily 2 hour naps but since starting Armour Dessicated Thyroid with T3 (in 2013), I get by with horizontal rests, not daytime sleep most days now. I have a 1:3 activity to rest ratio – for each hour of activity, I need about 3 hours of rest. I consciously “rest before and recover after” extra activities not part of my daily routine (from laundry to a doctors appointment to dinner out).

I keep regular hours, and most days I am able to make meals, take a 30-60 minute walk and can manage one “extra activity” per day. I do a bit of volunteer work. I leave the house 3-4 days a week for 1-3 hrs without a setback, depending on what I do. I can grocery shop (with effort) but no longer shop for pleasure. Despite this careful pacing ANY infection, social event, life stressor, or simply too long duration of mental, emotional or physical activity can tip me over into Post Exertinal Nueroendocrine Exhaustion PENE. I have a 36-48 hour PENE/PEM response (the time from the over-exertion to the crash) with increased flu-like and CNS symptoms and usually must rest 3 times as long as whatever caused the crash took to do.  After a bout of flu or an abscessed tooth, I have had bad dysautonomia episodes that resolved over weeks or months to my “baseline” – my “new normal” since Lupron activated or switched on (or off) a gene or damaged my mitochondria and reset that baseline. For me, the Lupron was the turning point. It is a tough balancing act. But I have worked on pacing, keeping healthy and being as active as I can.

Ironically my husband of 30 years has Fibromyalgia and knows keeping active helps him.  So we support and encourage each other. He helps me be active and I remind him to pace and rest and we have a happy life, all things considered. He was able to retire at 55 so we are able to manage our conditions and enjoy life. We have a truck-camper RV and a small cabin-cruiser boat from before I got sick, both of which have allowed me to travel and do things at my own pace, with my own bed, bath and kitchen.  Whether we are visiting family or traveling the West, this kind of travel allows me to be as active as I can without causing crashes. We are both very grateful for all we have.

It seems there are many ways to end up with the same or similar body response and set of symptoms that is ME/CFS and/or Fibromyalgia. For me if it hadn’t been Lupron, it would probably been something else since I have so many co-morbid factors. Understanding this has helped with acceptance. And knowledge is power. I know there are no ways, yet, to reset the genes or fix the mitochondria, or other body systems that no longer work as they should, but I am hopeful researchers, who care and collaborate, will find the answer.  In the meantime, I will work to be as healthy and well as I can be.