Endometriosis: A Challenging Journey. A Powerful Voice.

Image Source: Original collaboration between Be a Rose Communications Manager Aanee Kai & Photographer Precious Dandridge.

Image Source: Original collaboration between Be a Rose Communications Manager Aanee Kai & Photographer Precious Dandridge.

There’s a quiet, painful condition that lurks among women throughout the world. It’s a condition without definitive cause or cure, affecting approximately 176 million women worldwide, not to mention the many women—particularly of adolescent age—who have not been properly diagnosed.  
Endometriosis: it is largely overlooked due to “a lack of understanding in the medical community,” as observed by Dr. Grace Janik in an interview for the New York Times. However, to the millions of women battling this condition, its effects are very real. Endometriosis is the growth of uterine tissue on the outside of the uterus, causing intense pain, fertility complications, heavy periods, severe fatigue, and gastrointestinal issues.  

Jennifer Flores of Kentwood Michigan serves as a powerful advocate for endometriosis awareness, and we at Be a Rose are honored to have an opportunity to share her story:

Endometriosis affected every piece of my life. I was constantly tired, nauseous, and hurting. Every month, I spent one week in a constant, blinding pain—for seven years before I was diagnosed. The first time I experienced symptoms, I was in eighth grade. The cramps came on so fast and so painful that I literally crawled on my hands and knees to the [school nurse’s] office, crying the entire way. I fainted from pain multiple times in high school, which was humiliating. I would sweat so much from the pain, it would leave my desk wet. For so long, I felt angry, alone, and scared. As I grew up, I realized it wasn’t my parents’ fault, because they just weren’t educated about endometriosis. And my pediatrician wasn’t prepared or educated enough to handle a 13-year-old patient with that kind of problem. 

I was tested for lupus, diabetes, appendicitis, and at one point, they told my father it was potential kidney failure. I was misdiagnosed nearly a dozen times. When I was 15, one doctor told my parents that I was a drug addict seeking attention. Aside from ibuprofen, I had never taken drugs in my life!  After that, I completely shut down. I dealt with the pain on my own and stopped talking about it. This was a nightmare. I was too embarrassed to go anywhere when I had my period because I was petrified of the excess bleeding. I was a thin girl, but the bloating would be so severe that it would look like I was pregnant, which, again, is very embarrassing for a teenager. The pain alone would cause me to see spots, and I would get dizzy and incoherent. 

At 17 and out of high school, I was still in significant pain and missed a lot of college classes. My work performance suffered each month because I could barely walk, and as a waitress, that’s a fairly essential job function. My boss at the time had recently been diagnosed with endometriosis, and upon overhearing a conversation with my coworker about my symptoms, she actually called my mother—who she knew as a previous coworker—and told her to get me to an OB-GYN right away.

Because my symptoms had been misinterpreted and ignored for so long, it took me two years to finally open up and tell my doctor the entire story. Once I shared my entire background, and how severe the pain really was, she skipped any additional testing and scheduled surgery. She truly saved me—not because this disease is fatal but because I was so disheartened by the lack of support.

I was finally diagnosed at 19 years old, and around the same time, I was told I could never have children. I wasn’t considered infertile, but the damage to my uterine wall was so severe the doctors didn’t think I would be able to carry a baby to full term. This caused a lot of turmoil. Not only is that difficult to understand at 19, but the man I was living with and planning on marrying left me shortly after I was told, telling me he didn’t want to be with someone who couldn’t give him children. As a teenager, that was incredibly overwhelming and hurtful. In addition to the pain and the anger of receiving a diagnosis only after so much damage had been caused, the person who was supposed to be there for me didn’t want me anymore. 

The medical expenses of endometriosis are extortionate. To date, I’ve had five surgeries to excise the endometriosis, as well as tubal ligation. I was lucky enough to have insurance because I would be bankrupt without it. When I was 20, I was put into “chemically induced menopause” by a drug called Lupron Depot. It essentially shuts down your ovaries and stops your body from producing estrogen, which is what causes endometriosis to grow. This meant that in the middle of summer, at 20 years old, working as a waitress in a pizza restaurant, I was having full blown hot flashes, night sweats, and mood swings. The drug also didn’t wear off the way that it was supposed to. I ended up needing hormone replacement drugs for a brief period of time in order to restart my ovaries, which sent me through another round of “puberty” at 21 years old. 

The surgeries are done laparoscopically, so the incisions aren’t terribly large, but I do have scarring. I incurred an infection during three of the six surgeries, which landed me back with the doctor and on antibiotics. This is yet another cost, and another consequence that stems from this disease.

When I was 22, I became pregnant for the first time. Unfortunately, around 11 weeks into the pregnancy, I had a miscarriage. The day of the last ultrasound, when they turned the monitor away from my husband and me, so we couldn’t see the screen because there was no heartbeat, was the worst day of my life. It felt like I had been hit by a truck.

Unfortunately, my body didn’t seem to recognize that my baby hadn’t survived, so I ended up needing a dilation and curettage. One thing that people don’t seem to understand is, once you’ve been diagnosed as having a miscarriage and have to schedule a procedure to have the baby removed from your uterus, it means you have to walk around carrying the baby until your procedure. In my case, it took three days.

It’s such a loss, and it hurts so very deep. At that time, it felt like endometriosis had chipped away and taken every piece of me that it could. 

Early detection could have saved me from a very serious case of depression. Although I have no regrets, and I am glad to have become a very strong person because of this entire situation, I still struggle with the anger of what happened to me. I overcame the lack of understanding from my loved ones, but I have a seriously difficult time trusting doctors. I still cannot understand how a group of educated pediatricians never knew to check for this disease and never referred me to an OB-GYN because of my age. They very nearly took my ability to have children.

The doctor who diagnosed me is my doctor to this day. She has performed all of my surgeries, including the dilation and curettage, and also delivered the two babies that I was able to carry to term. She is the only doctor that I trust because she was the first person to hold my hand and say, “No, you are not crazy. There is something wrong here.”


Today, Jennifer speaks out and shares her voice on endometriosis as often as she’s able in order to “keep it in front of people” and remind them that this condition is very real and very deserving of our support, research, and awareness. Upon reflection of the painful and invasive surgical options currently available to “manage” endometriosis, Jennifer asserts:

The best way to challenge this and to support more research is to DEMAND more research. Stop asking women to allow their bodies to be cut open and to accept these violent attempts at relief instead of providing a cure.

How can you help? Support endometriosis research through the World Endometriosis Research Foundation. Further, sharing stories such as Jennifer’s helps to challenge the stigma and spread awareness. For Jennifer, her pain and turmoil was ignored, misjudged, and underestimated for far too long. Women and girls deserve BETTER. Now is the time to speak and lend support!

Be a Rose is honored to share Jennifer’s voice on this important issue of women’s health. Through our research, blogs, and women’s health workshops, we at Be a Rose are privileged to engage the community and create a positive impact in women’s lives.  Please consider joining the conversation by following Be a Rose on Facebook and visit our invitation to take action with Be a Rose!

 

By: Aanee Nichols with Jennifer Flores

Expanding the Conversation: The Intersection of Feminine Hygiene & Autism 

Let’s be honest: the female body is complicated.  Even for women with adequate education and resource accessibility, the female anatomy, reproductive organs, and cycle can be difficult to comprehensively understand on one’s own (no, the term “vagina” does not encompass everything you see when you look “down there,” and yes, there are three holes), let alone explain in detail to someone else.  In addition to the complicated anatomy, there’s a deeper, crucial conversation about menstruation and feminine hygiene that has to happen so that all females fully understand their bodies’ natural processes and the options available to them to maintain health, hygiene, and confidence.  Experts assert that having this conversation “early and often” for girls approaching puberty reduces anxiety and instills a sense of appreciation and ownership of their bodies.  The value of this conversation is inarguable; however, there are several factors that may obstruct ease and access to this information for young girls, including but not limited to stigmatization, socio-economic status, familial structure, and physical or mental impairment.  While these factors may encumber the conversation, the necessity for it remains.

For young women with autism, education about their bodies and appropriate training on the skills necessary to maintain health and hygiene can have a significant positive impact by providing these young women the possibility of  “greater privacy and independence, heightened community access, and less illness and unnecessary medical intervention,” as asserted by behavioral experts.  Thus, the “period conversation” becomes even more critical to a higher quality of life.

Parents and caregivers of girls with autism can use several strategies and tools to best serve these young women and prepare them for menstruation.  One such approach is the use of chaining, which involves breaking an objective (such as changing a pad) into small concrete tasks and providing guidance, repetition, and re-ordering of steps until the objective has been mastered.  Another tool is the use of a “period kit.” The parent may work with the child to put together a package containing items such as pads, pantyliners, a spare pair of underwear, and a reference guide.  This activity encourages a positive outlook by allowing the girl to help pick out the items, as well as a stylish but discreet container for these necessities.  Again, a sense of appreciation and ownership of her changing body and her own health and hygiene is key to female empowerment, so encouraging this positive perspective before puberty paves the way for a healthy transition.  

If young women with autism are granted these vital conversations with their parents, caregivers, doctors, and/or therapists, menarche can be handled as a welcome milestone in their lives, rather than a shock or struggle.   By recognizing the needs of women with autism and extending necessary resources to them, their self-esteem, independence, and opportunities may be expanded significantly. This, in turn, leads to a healthier and more productive society, exemplifying the notion that issues of women’s health should matter for everyone.  No portion of the population should be overlooked when it comes to health.   For more information on autism and ways in which you can get involved, please visit the Autism Speaks website.  

And, as always, we hope you’ll consider our invitation to get involved with the Be a Rose mission. Together, we can open and embrace the period conversation in a powerful way! Follow us on Facebook for more updates on all our community efforts!

 By: Aanee Kai

There Is Help Beyond Bars

Source: Ms. Magazine Blog

Source: Ms. Magazine Blog

There Is Help Beyond Bars

Our resolution: raise awareness about women’s health in prisons

Since our start less than a year ago, we’ve been focused on strengthening women by promoting health. This past fall and winter, we’ve developed various connections in the community. We’ve hosted educational clinics at Exalta Health (previously Health Intervention Services) in Grand Rapids, and run feminine product drives at Michigan OB/GYN PC, Dégagé Ministries, Fountain Street Church, and Grand Valley State’s Professional Organization for Women Entering Reality (POWER)--just to name a few.

Now, in 2017, we’ll be pushing forward to improve menstrual health for some of our less visible, yet no less important neighbors. Incarcerated women often have frustrating experiences with accessing health services, which leads to poor health outcomes. In a recent Canadian study, women described multiple barriers to accessing health services that resulted in negative consequences to their health: treatment interruption; health disempowerment; poor mental and physical health; and recidivism into addiction and crime upon release.

"Women are being incarcerated at nearly twice the rate of men," says Asha Bandele of the Drug Policy Alliance. "From the 1980s, the female prison population has grown over 800 percent, whereas the male population grew just about 400 percent. Today, some 1 million women are under the supervision of the criminal justice system, with more than 200,000 of them incarcerated."

So far, there have been few comprehensive studies on health effects for incarcerated women in the United States. Stressors before, during and after incarceration contribute to menstrual irregularity, indicating that these women are among the most at-risk for poor menstrual health and hygiene. In a recent Detroit Free Press article on Michigan’s only all-women’s prison,  former inmate Mary Beth Vines said that wait times for health care services were “insane.” “You have to be seen by a nurse three times in a 30-day calendar period before a doctor will see you,” she said.

On June 13, the U.S. Justice Department filed a lawsuit against the Women's Huron Valley Correctional Facility, which is described as “an overcrowded prison where drugs are widely available, the roof leaks so badly it has shorted out the lights, and fatigue and stress that is detracting from the ability of corrections officers to function effectively.”

Upon their release, this population of women needs not be forgotten. They need just as much support in meeting their feminine hygiene needs as part of their integration back into our community. Lack of proper menstruation management can be an immediate source of low self-esteem and depression for these women.

Be A Rose is committed to strengthening women’s health support networks, wherever it’s needed most. When asked, incarcerated women made three important recommendations for correctional health service delivery: provision of comprehensive health entry and exit assessments; improvement of health literacy; and establishment of health support networks. In our upcoming advocacy work, we hope to take women’s health seriously inside prisons, and in communities of returning citizens.

Our goal in the spring of 2017 is to make connections with various programs in our community that provide reentry resources to women rejoining our community from prisons or jails. We want to ensure that meeting their feminine hygiene needs will not be a barrier in their resettlement process to becoming productive and contributing members of our community and of their families. If you know of any programs that are offering reentry assistance to women in the Greater Grand Rapids community please contact Christine Mwangi at info@bearose.org.

End of 2016 Newsletter

We at Be a Rose would like to sincerely thank all our family, friends, donors, and all community and corporate partners. It is thanks to you that our first 6 months of operation (June - December 2016) were a huge success. To read more about our work throughout the year, click HERE for our End of Year Newsletter. We look forward to reaching more women in our city and it is our hope that you will continue to be part of the reason our mission is fulfilled.

Happy New Year. May 2017 be full of abundant blessings!

Powerful Woman Interview: Kim Kennedy

It doesn’t take long to recognize that Kim Kennedy is a doer. If there’s something to be done, especially on behalf of women, count on her to address it. She’s a military veteran, a member of the Church of God in Christ, and a force for good in her community. For Kennedy, this means encouraging women to help and support each other.

Kennedy’s journey toward advocating for women’s health started in a VA hospital. Admitted for a critical surgery, Kennedy’s encountered barriers to what should have been routine care. She also discovered that the hospital didn’t provide free menstrual hygiene products in bathrooms. In response, she began working to holistically support female veterans in West Michigan.

In 2013, Kennedy organized the first Women Veterans Resource Fair in West Michigan. The fair served a portion of the 50,324 female veterans living in Michigan. More importantly, the fair acknowledged the needs of female veterans, who often feel underrepresented upon returning from deployment. Each veteran who stopped-through got a gift bag containing beauty supplies, feminine hygiene products, and other items.Kennedy’s fair also quickly made a major impact around the country, and her story was picked-up by the VA hospital system’s magazine.

There are about 2.2 million women veterans nationwide, of an estimated 22.3 million total veterans, all of whom could benefit from networking events, and women-centered health care. When she saw the need, Kennedy helped create a place for female veterans to fit in.

We asked Kim what advice she has for other women looking to make a similar change in their communities. First, “Pick two or three things that are congruent with your values, and run with them.” Second, “Be able to bring-up difficult things.” “Women’s health isn’t that glamorous, it’s everyday,” Kennedy says. “That’s what makes it so important.”

Making feminine hygiene supplies free and available in public buildings is one of those everyday, hard things. Lucky for us, there are strong women like Kennedy who know that all women deserve individualized, female health care and holistic support. She is currently organizing a red carpet Christmas Bazaar at the Kentwood Parks & Recreation Center on Saturday December 3rd from 12PM-3PM. Feminine hygiene or toiletry items donated as an entry fee will be donated to the Healthcare for Homeless Vets, House of Blessings, and Be a Rose's Adopted Kenyan school Paul Mbiyu Primary School. 

 

  

Support Activism, and Take Action to Lend Dignity to Women in West Michigan

When Joanie Balderstone and Rebecca McIntire dropped-off interview clothing to women in a Camden, NJ homeless shelter, they asked what else was needed. Overwhelmingly, the women answered, “Pads and tampons.” These items are usually in short supply at homeless shelters, are often an afterthought for donors. Balderstone and McIntire, founders of Distributing Dignity, began work in New Jersey and Pennsylvania, and have since enhanced the dignity of countless women in need.

Because of the advocacy initiated by Balderstone, McIntire, and countless other women, Michigan is now considering legislation to provide free feminine hygiene products at public buildings, which could help alleviate some stress on low income women and girls. The state is also one of a handful considering eliminating the so called “tampon tax,” which considers feminine hygiene products taxable luxury items. Over a lifetime, these taxes have inflated the cost of having a period to as much as $18,000--an especially difficult burden on low income women.

Michigan Senator Rebekah Warren of Ann Arbor, a sponsor of this legislation, called the tampon tax “outdated and discriminatory,” in a recent statement, arguing that women shouldn’t have to “pay a 6 percent penalty when they buy medically necessary items.” While repealing the period tax is welcome progress, more comprehensive solutions are needed for those who fall through the cracks.

Be A Rose accepts in-kind and monetary donations to supply at risk women for all their monthly needs. Overall, we aim to disrupt the cycle of poverty and shame many women, young and old, experience due to a lack of reproductive health education and access to feminine hygiene supplies. Our work for women’s education and empowerment, coupled with policy changes, gives us hope for a strong future for women in West Michigan.

You, too, can take action to lend dignity to women in need, bring in-kind donations to one of our drop-off locations, or contact a Grand Rapids area homeless shelter.

By Kai Koopman

Periods Are Powerful

Necessities--like food and medical supplies are usually exempt from sales taxes. Until just recently, in New York State, tampons and menstrual pads were not. On July 21, governor Andrew Cuomo signed a unanimously passed bill to end the so-called “period tax,” calling New York’s action a matter of “social and economic justice.”

The Governor was following the lead of pioneering New York City Councilwoman, Julissa Ferreras-Copeland, who wants you to know that “periods are powerful.” She sponsored similar legislation after spearheading a successful program that provided free tampons and pads to girls in Bronx and Queens high schools. Ferreras-Copeland’s measure will serve 325,000 women, and provide 2 million tampons and 3.5 million pads each year, just to homeless shelters.   

These measures make New York City and State a pioneer in proactively guaranteeing access to these kinds of products. The impact for women, especially low income women, will be immense. New Yorkers will save an estimated $10 million per year, and won’t be burdened with a cost that even President Obama has called unjust.

Earlier this year, the Huffington Post reported that periods can cost women over $11,000 in a lifetime, and cause female students to miss school, and even fall behind male classmates. Girls part of the Bronx and Queens pilot programs attended school at a measurably higher rate, and reported feeling more confident and focused at school.

These changes are part of a growing movement for period equity. New York’s action has prompted 15 other states to consider similar legislation. These states could not only make periods a bit more manageable for their constituents, but also update old tax codes to match commonly-held values for women’s equality.

We know that empowered women statistically live much longer, healthier physical and emotional lives. We know they are far more likely to complete formal education, participate in local and national economics, and empower other women and girls to do the same. We applaud the city councilwoman and governor from New York for their groundbreaking work.

By Kai Koopman

 

Lovestain / No Shame: Menstruation in the Media

Menstruation. That’s right, we’re talking about it.

There’s one thing that’s certain about menstruation: it’s an absolutely natural phenomenon -- as natural as eating or drinking -- and, as author of Newsweek’s cover story, “There Will Be Blood: The Fight to End Period Shaming Is Going Mainstream,” Abigail Jones, says, menstruation is “beautiful too: There’s no human race without it.”

So why are we afraid to talk about it? And why is there a conspicuous lack of access to menstrual hygiene management products and education for all but the most privileged women the world over?

Menstruation has been a taboo topic of conversation in the modern world, and what’s worse, menstrual hygiene management has been largely ignored as a public health issue. “The period,” Jones explains, “is one of the most ignored human rights issues around the globe -- affecting everything from education and economics to environment and public health -- but that’s finally starting to change.”

So far, it’s been an uphill battle. Even in the U.S., there’s a big access gap for underprivileged women. “Tampons and pads are taxed in most states, while things like Viagra, Rogaine and potato chips are not.” In Michigan, doughnuts are exempted from sales tax, but tampons aren’t provided in the restrooms at schools or public buildings. Even President Obama seemed flummoxed about the tampon tax during an interview with YouTube star, Ingrid Nilsen.

As Jones’ article illustrates, this past year, periods have gone from censored talk to mainstream news. In fact, Cosmopolitan said 2015 was “the year the period went public.” From high-powered Manhattan start-ups to late night talk shows, menstrual equity has come out of secrecy into frank discussion. BE A ROSE is part of the change, too. We’re opening a dialogue about menstruation and reproductive health in West Michigan to help lift stigma and empower refugee women.

Incremental change is being made in Kenya, too. In 2004, it became the first country in the world to eliminate sales tax on menstrual products. In Paul Mbiyu Primary School, where BE A ROSE works, girls are discouraged from attending school while menstruating, and often fail to finish coursework -- and even graduate -- because of myths and misguided cultural understandings of blood and menstruation. “Menstruation contributes to 1 million adolescent girls in Kenya missing up to six weeks of school each year… Two times the rate of boys starting puberty.”

The key to affecting broad change in places like rural Kenya is “low-cost, sustainable infrastructure solutions,” says Marni Sommer, a public health expert. In response, BE A ROSE is also improving sanitation infrastructure in Murang'a County, Kenya, to give girls private places to manage menstrual hygiene at school.

These small steps have huge implications. Gina Reiss-Wilchins, CEO of ZanaAfrica, another organization working in Kenya that helps adolescent girls stay in school during their periods, says, “If every girl in Kenya finished secondary school, there would be a 46 percent increase in the country’s GDP across her lifetime.”

These statistics show that empowered women statistically live longer, healthier lives; are far more likely to complete formal education, and participate in local and national economics; and will empower other women and girls to do the same. Abigail Jones and Newsweek are making progress toward this goal -- and you can, too. Take action, and join the movement today.

By Kai Koopman