The “Campaign to End Chronic Pain in Women” Launched on Capitol Hill

Thanks to the CFIDS Association for emailing the following press release and information on the Campaign to End Chronic Pain In Women.

The following press release about the launch of the Campaign to end Chronic Pain in Women was sent to more than 1,000 media outlets across the nation yesterday after an event on Capitol Hill that attracted congressional staff from 35 offices, leaders of women’s organizations and health organizations and reporters. The event was held in cooperation with the Congressional Caucus on Women’s Issues at the Capitol Visitor Center.

After the event, leaders of the CFIDS Association of America (Kim McCleary), the Endometriosis Association (Mary Lou Ballweg and Carol Drury), the TMJ Association (Terrie Cowley and Deanne Cleare) and the National Vulvodynia Association (Christin Veasley) met with staff in the offices of the Senate Majority Leader (Senator Harry Reid), the Speaker of the House (Rep. Nancy Pelosi), chairman of the Senate Health, Education, Labor and Pensions and Appropriations Committees (Sen. Tom Harkin), chairman of the Senate Aging Committee (Sen. Herb Kohl), chairman of the House Energy and Commerce Committee (Rep. Henry Waxman) and chairman of the Health subcommittee of the House Energy and Commerce Committee (Rep. Frank Pallone) as well as other House authorizers and appropriators. They discussed the policy recommendations in the report and gained important feedback about ways in which the campaign goals can be incorporated into new programs being implemented under the Patient Protection and Affordable Health Care Act.

PRESS RELEASE
For Immediate Release
May 19, 2010

The Overlapping Conditions Alliance Launches the “Campaign to End Chronic Pain in Women” on Capitol Hill, to Fight Discrimination Against Women in U.S. Healthcare

Campaign Releases Comprehensive Report & Groundbreaking Campaign Film on Chronic Pain in Women

WASHINGTON D.C. (May 19, 2010) – The Overlapping Conditions Alliance today launched the Campaign to End Chronic Pain in Women, an advocacy campaign fighting to end discrimination and improve care for women suffering from chronic pain. The Campaign aims to improve the quality of women’s lives by raising awareness about chronic pain conditions that disproportionately impact women, as well as the neglect, dismissal and discrimination faced by women living with chronic pain under the current U.S. healthcare system.

A representative from the office of Rep. Tammy Baldwin (D-WI), a leader of the Congressional Caucus for Women’s Issues, provided opening remarks. Congressional staffers, patients, and other Washington D.C. area advocates for women’s health issues were also in attendance.

“While healthcare reform legislation took an important first step to address chronic pain issues, we have a lot of work ahead of us,” said a representative for Caucus Co-Chair Rep. Tammy Baldwin (D-WI). “I look forward to working closely with the Campaign to End Chronic Pain in Women to teach our healthcare system how to confront chronic pain and ensure that no woman suffers needlessly.”

At today’s press conference the Campaign released a groundbreaking report, Chronic Pain in Women: Neglect, Dismissal and Discrimination, which offers policy recommendations that could save the government billions of dollars in wasted healthcare costs each year. The hour-long launch event also featured the premiere of the short film, Through the Maze: Women and Pain, and the unveiling of the Campaign website www.endwomenspain.org/.  Following the event, Campaign leaders are scheduled to meet with targeted congressional offices to discuss key report findings and policy recommendations.

“This campaign is about the pattern of neglect, dismissal and discrimination of women’s chronic pain conditions, which serves as the latest example of one of the many gaps in the U.S. healthcare system that deepen human suffering,” said Kim McCleary, President & CEO, CFIDS Association of America.

Chronic Pain in Women: Neglect, Dismissal and Discrimination, which was commissioned by the Campaign, examines the current lack of effective treatments and research funding for chronic pain conditions that predominantly affect women, and how improvements in research, education and access to effective treatments could contribute to improved quality of care and cost control.

“The costs to patients go beyond dollars,” said Terrie Cowley, President, TMJ Association. “Patients can lose their dreams and hopes of careers, of a family, of a quality life and even life itself. This is why it is so important that cost effective investments in research be made, and that a campaign is created to educate healthcare professionals and promote public awareness of these conditions.”

According to the Campaign report, in 2009 the National Institutes of Health invested only $65 million in research into the six chronic pain conditions highlighted in the report – chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular (TMJ) disorders and vulvodynia – just two-tenths of one percent of its total budget. That is an average of just $1.33 for every affected woman and represents less than one-tenth of one percent of the annual estimated cost of these conditions.

“Women in our society are oftentimes raised with the notion that it’s normal to suffer,” said Mary Lou Ballweg, President & Executive Director, Endometriosis Association. “Education of healthcare professionals and the general public is essential during this time of reform, to ensure that women in this country no longer have to suffer in silence.

The Campaign includes volunteer leaders from four non-profit patient advocacy organizations, including The CFIDS Association of America, The Endometriosis Association, The National Vulvodynia Association, and The TMJ Association.

“Chronic pain doesn’t just affect the sufferer – it affects each and every one of us and every part of our society,” said Christin Veasley, Associate Director, National Vulvodynia Association. “By appropriately investing in research, educating medical professionals and the public at large, we have a real opportunity to change the lives of millions of American women, their families, our economy, and society as a whole.”

About The Campaign to End Chronic Pain in Women:
The Campaign to End Chronic Pain in Women is an advocacy campaign fighting to end discrimination and improve care for women suffering from chronic pain. The Campaign is made up of volunteer leaders from the CFIDS Association of America, Endometriosis Association, National Vulvodynia Association, and The TMJ Association. Pfizer helped to offset the costs of campaign materials. For more information, visit www.endwomenspain.org/.

Gynecological Concerns In ME/CFS Women

I find that now that I’m getting older, I am never quite sure if the symptoms I am experiencing are due to ME/CFS or if they are pre-menopausal symptoms.  My doctor had told me that I was starting to go through the pre-menopausal stage, but it’s still hard to tell which symptoms are from what at certain times of the month.  I was reading through an article I found on gynecological conerns in CFS and found that I could relate to a lot of what the author (Rosemary Underhill, MB, BS, MRCOG) was talking about.   She says:

Diagnostic confusion sometimes occurs because some symptoms are common to both CFS and gynecological conditions such as premenstrual syndrome or menopause. These common gynecological conditions can also cause an exacerbation of CFS symptoms. The female reproductive hormone system might also play a part in the causation and persistence of CFS, since the illness occurs twice as often in women as men.¹

Although scientific studies are few, a number of gynecological conditions have been found to occur more frequently in women with CFS. These conditions are usually associated with abnormal reproductive hormone levels, immune dysfunction and/or pain. Some of these conditions may even pre-date the onset of the CFS.^2,3 Why this should happen is open to conjecture. Endocrine and/or immunological changes may possibly be present in some CFS patients before the full-blown syndrome becomes manifest.

This next point Rosemary Underhill makes needs to be read by doctors everywhere:

Gynecological symptoms in women with CFS should not be assumed to be merely part of the CFS symptomatology. Their investigation and treatment in patients with CFS should follow standard gynecological practice, and patients will benefit from relief of symptoms.

How many times do we go to the doctor (men and women CFS patients) and our problems are dismissed because we have ME/CFS.  We are not taken seriously because doctors, if they believe in CFS, just want to throw every symptom under the CFS umbrella. It is so frustrating.  For female CFS patients, everything is worse because our bodies go through a lot more changes than men. 

The article states that many pre-menopausal women have “scanty, irregular cycles, bleeding between cycles and periods where their cycle is absent.

These symptoms can predate the onset of CFS, are typical of anovulatory or oligoovulatory cycles and can be associated with a low estrogen state. Hirsutism may be associated with oligomenorrhea. Researchers have found that ovarian hormone (estradiol) levels were low in some 25 percent of a small group of pre-menopausal women with CFS, in spite of normal follicle stimulating hormone (FSH) levels. The researchers suggested that a chronic estrogen deficiency state is present in a subgroup of women with CFS.  The normal FSH levels distinguish this condition from menopause where FSH levels are raised. At menopause, heavy irregular periods, scanty periods or amenorrhea can occur.

Underhill says that many women find their ME/CFS symptoms worsen at menopause.  This is one reason why it is hard to tell whether our symptoms are due to ME/CFS or gynecological concerns.  Check out these central nervous system symptoms associated with low estrogen:

• fatigue
• headaches
• dizziness
• lack of concentration
• insomnia
• depression
• anxiety
• hot flashes
• night sweats

These symptoms are like a run-down of CFS symptoms.  The difference, however:

One point of difference is that vaginal dryness is usually present if estrogen levels are low and less likely to be present if symptoms are due to CFS.

The article states that ME/CFS women are also more likely to suffer from PMS – approximately 50% of CFS women.  Approx. 30% of ME/CFS women suffer from dysmenorrhea (severe uterine pain).  In normal women, only about 15% suffer from this. 

Severe dysmenorrhea may occur on its own, or it can be a symptom of several gynecological conditions which are more common in CFS patients. These include endometriosis, fibroids, pelvic inflammatory disease and ovarian cysts. In all these conditions, menses may be heavy. If there is any abnormality found on examination, such as a pelvic mass, further gynecological investigation is indicated. Mild dysmenorrhea usually responds to analgesics such as aspirin or Tylenol, but NSAIDS may work better. Severe pain can be treated by suppressing ovulation with oral contraceptives.

Endometriosis affects up to 20% of ME/CFS patients.  I am fortunate to have never had this problem, although I have had very heavy cycles, very bad menstrual cramps, and PMDD, which is a severe form of PMS.  It is also about 13.8% of ME/CFS female patients who suffer from Interstitial Cystitis.  I do have this very painful illness.  When people ask me what it is like to have IC Disease, I describe it as a bladder infection times 10. 

Interstitial cystitis is thought to be associated with some immune system abnormalities.

Underhill says that 20% of ME/CFS patients have very painful urination or dysuria.  Symptoms include pain, urinary frequency and urgency both day and night. 

Urine culture may show a bacterial infection which can be treated with antibiotics. However, sometimes the urine is sterile and symptoms may be due to interstitial cystitis, detruser instability, urethral syndrome or endometriosis. The patient should be referred for further investigation.

Approximately 29% of ME/CFS females report having complaints of vaginal discharge and sexual dysfunction is reported in up to 20%. 

Some people believe that women with CFS suffer from a chronic multi-system yeast infection which exacerbates CFS symptoms. This has not been proven by culture and oral swabs are rarely positive for yeast. Vaginal yeast infection is normally a localized condition and only local treatment is indicated.

Loss of libido can be associated with low reproductive hormone levels, or due to the severe fatigue, malaise and pain which are prominent in CFS.

There have been no reports of increased risk of ovarian cancer in ME/CFS females but there is a history of more fibroids and ovarian cysts.  CFS patients are also more likely to have had a hysterectomy than normal females.  Underhill says that this may be associated with the increased numbers of patients with fibroids, ovarian cysts or endometriosis.

Sign Petition to Raise Awareness During National Endometriosis Awareness Month

Thanks to Jeanne over at Endo Blog for working extremely hard to help raise awareness for Endometriosis, a debilitating yet little understood chronic illness millions of women worldwide suffer from.  If you would like to sign Jeanne’s petition to help support Endometriosis awareness, please click THIS LINK, read the information on the page, then click at the bottom to complete the petition.

If you would like to learn more about Endometriosis, please visit Endo Blog and my article on National Endometriosis Awareness Month.  You can also view many Endometriosis websites and blogs via my Resources page.

Symptoms of Perimenopause vs. CFS

This year I turn 40 and for the past couple of years I have felt the hormonal shift going on within my body.  While my doctor continues to claim that I am too young to be experiencing any symptoms of premenopause or perimenopause, I know that this is what I am suffering from.  My menstrual cycles have been changing to where I may have my cycle a full 9 days where it used to last 5 days.  My cycle used to come exactly the same time each month and for the past year or so it has been as much as a week late several times and it has also been as much as a week early several times also.

I will suddenly get extremely hot and my face and neck will turn beat red and I will feel as though my body is on fire.  My mood changes are so extreme around my cycle that I don’t even know who I am.  My doctor claims that it is PMDD (Premenstrual Dysphoric Disorder) but the medication I’m on for that isn’t working so I fully believe I am having perimenopause symptoms.

Where the confusion lies is that there are similar symptoms between perimenopause and ME/CFS so for women my age, or older, it can be difficult to know which is acting up.  Is it the hormonal changes or is it a CFS flare?  Symptoms of perimenopause can begin as early as 10 – 15 years before a woman’s menstrual cycle actually stops. Symptoms of perimenopause include:

• Irregular periods
• Heavy bleeding
• Hot flashes
• Vaginal changes
• Hair loss
• Loss of libido
• Dry eyes
• Drastic mood swings

The symptoms of perimenopause that are the same as those symptoms of ME/CFS include:

• Headaches
• Sleep disruption/insomnia
• Weight gain
• Short-term memory impairment
• Cognitive dysfunction
• Fuzzy thinking/inability to multi-task�or brain fog
• Anxiety
• Fatigue
• Depression

What happens to the body during perimenopause?  According to Women to Women :

During perimenopause, the ratio of estrogen to progesterone is frequently in a state of flux, which can manifest along with other symptoms as very heavy (and maybe even frightening) bleeding. In our culture, many women tend to be operating with an internal hormonal balance tipped toward the estrogen side of the scale. This tilt is often the result of a diet high in simple carbs and low in quality protein, a lack of essential nutrients and fats, and chronic exposure to environmental toxins and artificial hormones such as endocrine disruptors. Prolonged emotional and physical stress, which I define as anything that works against your state of balance, will also upset the hormonal applecart. In today’s fast-paced, disconnected, eat-and-run world, it is no surprise to me that younger and younger women are coming in to my practice with symptoms of hormonal imbalance and perimenopause.

In some cases, women in perimenopause may have low levels of progesterone in comparison to their estrogen levels. In other cases, the progesterone level is fine, but estrogen levels are too high. Another case we are seeing more frequently is where all three of the key hormones which flux during this time, estrogen, progesterone and testosterone, are too low. What’s most important to recognize is that each woman needs to be evaluated differently, preferably by a medical practitioner conversant in integrative or alternative medicine. More often than in the past I find conventional doctors are quite willing to discuss the reality of perimenopause, but natural, long-lasting solutions are still hard to come by. Most conventional practitioners don’t believe that people can change their lifestyle and eating habits. My response is that I know and have seen that they can. And I will tell you this: no woman needs to suffer with symptoms of hormonal balance, at perimenopause, menopause, or after menopause. You can feel better and you can start right now.

Being in perimenopause does not necessarily mean that you will follow an immediate and direct path to menopause. Some women go for years in this transitional state, whereas others sail through in just a few months. What does seem to influence the severity of symptoms is the weight of other burdens women may have placed on their bodies over the years. Poor nutrition, chronic stress, and a lack of daily exercise are three major amplifiers because they each play a significant role in the body’s ability to detoxify and maintain homeostasis. Lifestyle choices such as smoking or drinking to excess are likewise compounding factors.

Link Between Fibromyalgia in Women and Sexual Dysfunction

A study by the Department of Physical Therapy, Recanati School for Community Health Professions, Faculty of Health Sciences, Ben-Gurion University in Israel found that there is a definite association betweeen sexual dysfunction and Fibromyalgia in female patients.

The major findings that resulted from this study found that female Fibromyalgia patients have:

• decreased sexual desire and arousal.
• decreased experience of orgasm.
• increased pain with sexual intercourse.

The study also found that Fibromyalgia, sexual dysfunction and depression may be interrelated “with the depressive mood responsible for desire and arousal problems.” It also suggests that the pain associated with sexual intercourse is due to lower than normal sensory input in FM.

Further studies are needed to evaulate the FM and sexual dysfunction in women further.

Having a chronic illness on its own can cause a women to lose her sexual drive and if you are losing all desire to have sex with your spouse, you should talk with your doctor.  Communicate your feelings with your spouse also so the lack of sexual desire isn’t taken personally.

Uncontrollable Stress Worsens Symptoms of Endometriosis

Endometriosis is a chronic painful disease which occurs when endometrial tissue grows as lesions outside the uterus, mainly in the area of the ovaries and fallopian tubes, but can also affect the intestinal tract. The condition results in chronic pelvic pain, painful menstrual periods and pain during intercourse.

Ihas been a poorly understood illness for years incapacitates and affects the productivity and lifestyle of millions of women around the world. Just in the United States alone, endometriosis affects nearly six million teen and adult women at a cost of approximately $1.6 billion annually.

Many women who have endometriosis report having high levels of stress due to trying to deal with the painful symptoms that affects their everyday lives – work, personal relationships and family. There is currently a new study that is investigating the relationship between stress and the painful symptoms of the disease. This will be the first time a study has been done that offers evidence of the negative consequences of stress in the progression of endometriosis, most likely through an effect on the immune system.

The study was conducted on seven female rats who were induced with endometriosis. Half were subjected to stressful swim tests for ten consecutive days, a chronic and stressful situation the animals could not control.

According to the senior researcher for the study, Dr. Appleyardm the study conclusion was:

“These findings contribute to our understanding of how stress may affect the severity of endometriosis. We think there is likely a connection with the immune system because of the observed levels of mast cells in the colon and the increased levels of inflammatory cells in the peritoneum of the affected rats, since this has also been observed in patients with endometriosis. The results offer a jumping off point to help identify stress-management interventions that will help those women who are affected by the disease.�

Vulvodynia: Genital Pain in Women

For years, women who have suffered from a chronic pain condition known as Vulvodynia have been accused of having sex phobias and told their symptoms are not real.� If a doctor has happened to believe these women, they tell them nothing can be done.� Gee, sound familiar?

The genital pain of Vulvodynia can be so severe that sexual intercourse can be unbearable and inserting a tampon, having�a pelvic exam and wearing a pair of jeans can cause excruciating pain.�

This immensely painful chronic illness� of the vulva can result in pain that is described as “shooting”, “searing” when any amount of pressure is applied.� I have also read where Vulvodynia was described as someone stabbing you “down there with a knife”.

It is estimated that approximately one in six women suffer from Vulvodynia and 6% of these women start showing symptoms before the age of 25.� For these, the symptoms are usually limited to burning pain in resonse to touch or pressure at the vaginal opening.

A professor of obstetrics and gynecology at the Weill Medical College of Cornell University (Dr. William Ledger) who is an expert on Vulvodynia said in a New York Times article:

“It is clear that there are subdivisions of this condition – one diagnosis doesn’t fit everyone.”

Dr. Ledger has found two genetically based predisposing factors in women with Vulvodynia:� women produce inadequate amounts of a substance that blocks an inflammatory response and an unstable production of a substance that normally responds to an invasion by yeast or bacteria.� This places these women at an increased risk for chronic infection.�

Dr. Ledger said:

“There’s good evidence that with Vulvodynia as a whole the women have more nerve fibers in the vulva and they are firing more pain signals to the brain. It’s kind of vulvar Fibromyalgia. most patients with Vulvodynia have very tender glands at the entrance to the vagina.”

Some treatments used for Vulvodynia include Celebrex and the muscle relaxer, Flexeril.� Another treatment that is used is a surgery that removes the layer of tissue containing many, many nerve endings.�

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