(Q1, 2023) The Women’s Health Activist Newsletter!

Quarter 1, 2023

All the articles for the latest quarter four, 2022 issue can be accessed by scrolling down this page, or by jumping to the articles that interest you specifically by clicking on the headings in our handy table of contents below.

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The Newsletter Archive

NWHN Values

We believe that…

  • Health is a human right.
  • Our gender identity, race, ethnicity, sexual orientation, disability, geographical location, socioeconomic status, insurance status, and/or immigration status should not dictate the quality of healthcare we receive.
  • This work is intersectional and must be conducted through a lens of diversity, equity, inclusion, and justice.
  • Lived experience and scientific evidence must drive health policy and shape healthcare.
  • Maintaining the integrity of our work is essential.

A Message from the Board Leadership

Because we’re accountable to the health care consumer (that’s you).

To All Our Members, Donors and Supporters,

Thank you for the warm welcome to the National Women’s Health Network (NWHN). To be able to take on such an important role is an honor, and I am humbled by all the creative ideas and insights you have shared for the future of the NWHN. The Network has identified several intersectional pillars that will guide our advocacy, messaging, strategic partnerships, and industry positions. I am committed to growing the Network, and I look forward to setting the course for the next 50 years of the organization. By way of introduction, I’d like to share a few things I’m particularly passionate about when it comes to improving women’s health and guiding the Network forward.  

I believe that to make the impact we want to make as an organization, we need to be data-driven thinkers. Throughout my long career in health promotion, education, and administration, I’ve made it a priority to understand the data and scientific methodology behind every new study that crosses my desk. Under my leadership, every decision that is made will be informed by credible evidence. I also believe in the power of qualitative data to inform decision-making. For example, the NWHN recognizes that women often learn best through the lived experiences of others. We exalt lived experience as the humanity behind the evidence and the personal stories that make up the statistics.  

I am also committed both personally and professionally to increasing diversity in clinical trials. The Network’s shared commitment to this goal is one of the many things that drew me to the organization. The fact that clinical trials have been conducted predominantly on white men obscures questions regarding the impact and outcomes for women – and the gap between men and women who participate in clinical trials still exists to this day. According to a recent Washington Post article, only 41.2% of clinical trial participants in a recent sample were women, despite the fact that women make up 50.8% of the population. (2022, June 27). The Washington Post, Health Section.)  

Although this gender gap is slowly improving, there is still a gap between white women and women of color as the latter continue to be underrepresented in the efficacy outcomes of clinical trials. Knowing that communities of color are underrepresented in clinical trials, I chose to participate in a clinical trial hoping the results would benefit thousands of women of color who are more susceptible to aggressive breast cancers which are detected at later stages. 

Lastly, I am deeply passionate about the Network’s mission, vision, and values. The National Women’s Health Network diligently works to improve health by strategically shaping policy, expanding access, and providing accurate, unbiased information to the public. We connect our work to intersecting issue areas of aging, maternal health, social determinants of health, breast health, abortion, disability, contraception, sexual and reproductive health, and FDA advocacy. This holistic approach means our policy recommendations and public education campaigns are more responsive and effective.   

If you haven’t visited our website in a while, take a look at the work we are doing that affects women in all their diversities. We remain open to your ideas and feedback on how we are doing and what we are doing that may have changed your life. Email us at [email protected] with your thoughts or become part of the change you’d like to see by sharing your story here.

-Denise Hyater-Lindenmuth, Executive Director

I Lived It

Real health stories from members to inspire, educate, and activate you.

Real health stories from members to inspire, educate, and activate you.

Tired, Afraid, and Looking for Answers – Cindy’s Perimenopause Story

Interview Granted by Cindy McKendall, NWHN Member – Edited by Adele Costa, NWHN Director of Communications

Menopause is defined by the National Institute on Aging as “A point in time 12 months after a woman’s last period.” The years leading up to that point, when women may have changes in their monthly cycles, hot flashes, or other symptoms, are called the menopausal transition or perimenopause. 

Perimenopause most often begins between ages 45 and 55. It usually lasts about seven years but can be as long as 14 years. Cindy McKendall is just one of thousands of women who has lived for years with perimenopause. She is 48 years old and lives in Illinois with her husband and two teenage daughters. She works from home full-time and enjoys hiking, comedy, and reading. We found Cindy in a virtual patient support group and asked her to share her lived experience of perimenopause with our members. This is her story.

***This interview has been edited for length and clarity***

All right, Cindy, why don’t you tell us a little bit about yourself? 

Sure. My name is Cindy McKendall, and I am 48 years old. I have been in what I believe is perimenopause for either ten years or six years, depending on which symptoms you go by. And part of the reason that I’m not sure how long it’s been is because I had a hysterectomy when I was 40; about eight years ago. I had a hysterectomy because I developed endometriosis after what I think was an estrogen surge in my late 30s. All of a sudden, my periods became very painful, and I tried a few different things, but luckily I had a really good OBGYN who ultimately recommended the hysterectomy, which helped for a while. But in 2017, about two years later, I started having insomnia that was different from the lifetime of insomnia that I had dealt with before.

Many people report that their insomnia starts or gets worse with menopause or perimenopause  can you tell us about your experience with insomnia, and how it changed

So before, when I was younger, I always had a hard time falling asleep. Once I could fall asleep, which sometimes took up to an hour, I could sleep for, like, seven or eight or nine hours, and it was generally fine. In the fall of 2017, I started waking up in the middle of the night, so I would be waking up multiple times during the night and not getting an unbroken night’s sleep and not feeling rested. And so, I kind of date that as my earliest perimenopause symptom, which is why I say it’s six years. But it could have been ten years if I go by the shortening of my cycle that I had before the hysterectomy. 

Anyway, I kept a journal of my sleep symptoms in the fall of 2017, so I could take that to my doctor. Here is a pretty typical entry from that time period:

December 11th of 2017: I went to bed around 10:30 and slept very lightly, was restless. I woke up a lot, I don’t know how many times. I’m really tired and don’t feel like I can handle the day. I burst into tears because I didn’t have time to eat breakfast.

I went to my doctor pretty soon after that, and they recommended Melatonin, so I started taking it. That sort of worked for a while until it didn’t anymore. I also took a meditation class around that time to help with the anxiety that I was having, which I now know is another symptom of perimenopause. But at the time, I just thought it was because of everything going on and, also, I was in a toxic work situation which I ended up quitting in 2018. The meditation class was probably one of the more effective things that I’ve actually tried for my insomnia, but it still wasn’t getting me all the way where I needed to be 

So melatonin was a short-term but not a long-term solution. Meditation was helpful but not enough. What else did you try?  

In 2019, because the melatonin wasn’t really working for me, my doctor put me on an anti-anxiety medication called Effexor and that did nothing for me. It made my insomnia worse. So I went off of it as soon as I could. And then in 2020, that’s when the pandemic started and everything got much worse in terms of my symptoms. I think stress probably exacerbated everything that was going on with my body. And not only was I waking up a lot, I was generally only sleeping a few hours a night. So, you know, waking up at four in the morning and that was it for the night. So it really all came to a head in 2021 when it felt like things were getting better in terms of the pandemic and the world around us,

“but for myself and for how I was feeling, I was looking around and thinking–why don’t I feel better? If everything is getting better, why do I feel so terrible?”

In the fall of 2021, I think I was only sleeping like two or three hours a night. The week before Thanksgiving I had a breakdown. I had a day where I tried to start my work day and I couldn’t function. I started crying and couldn’t stop. I was supposed to call into a Zoom meeting, and I couldn’t do any of it. I just couldn’t stop crying. Luckily, I work from home, and have a really caring boss who is actually a woman in her fifties herself. I was able to get a hold of my boss and say, I think I need some time off. She could tell by the sound of my voice that something was very wrong, but I didn’t have to explain it to her. I ended up taking about two weeks off. I got an emergency appointment with my doctor, who then put me on Celexa, which is an antidepressant.  

And at this time, did your doctor understand that you were going through perimenopause and that these symptoms were related, or were the insomnia, anxiety, and depression all being treated as separate issues?  

It was all being treated as not connected. Providers would say “Oh, you are anxious, so let’s treat your anxiety.” Never mind the fact that I’d never had symptoms of anxiety before. Same thing with the depression that I was experiencing. I have always been able to handle what life throws at me. I have experienced depression, but it tends to be situational and not chronic. So this felt different than the times before when I dealt with depression.

Another factor that contributed to this fractured care, I think, was that my doctor was a little younger, and didn’t have any personal experience with menopause. By that point though, I’d started to understand the importance of educating and advocating for myself. I had read a couple of books about menopause, and that really helped me understand what the hell was going on with my body. I had also been reaching out to a lot of my friends, people my age, to ask them, are you having these same problems? I don’t understand what’s going on with me. Are you having the same thing? By and large, my friends were like, “I’m having a little bit of issues, but no, nothing like what you’ve got going on.”   

I bet that raised alarm bells for sure. Did the Celexa help?  

A little bit, but it also had side effects. It made my stomach feel terrible so I did not stay on it very long. When I went back to the doctor for a follow up, I asked for hormone therapy, and she said she wasn’t familiar enough with the treatment risks and benefits to be comfortable prescribing it herself. But she was able to refer me back to my gynecologist who had done my hysterectomy, and had also delivered my kids, and is now a NAMS certified menopause specialist.

 “So I got really lucky in that respect that a doctor that I knew and trusted is also now a menopause specialist, and she’s also my age.”

When I went to her and had a consultation, she was very open to the idea of hormone therapy. So it was about a year ago, January 2022, that I started on an estrogen patch. Besides meditation, that has helped my insomnia more than anything. But I’m still waking up multiple times during the night, and I never feel rested and very rarely have energy.  

That’s a shame. How do you cope with just being tired all the time now that this is basically as good as it’s going to get between the meditation and the estrogen patch?   

The fatigue is very debilitating. I currently don’t have much of a life. I work from home and the energy that I have, I direct mainly just to my job and making sure my family gets fed. And then, I am a couch potato at the end of dinnertime and I go to bed and sometimes try to tell myself I’m going to sleep great tonight and do some positive affirmations or whatever, but that doesn’t usually actually happen. I used to be someone who exercised regularly and I miss that. I used to go see friends and I don’t do that anymore. I just really feel like I’m just existing and not living.

And what about the anxiety and depression? Has that improved at all?  

The anxiety and depression has improved drastically thanks to the estrogen. One of the insidious things about perimenopause that I’ve learned is that there are so many ways that hormones affect all the systems in your body and nobody really teaches you any of it. You have to figure it out on your own. So that’s what I did. Things like, I had really dry itchy skin for a while when I’ve always been oily. That was a perimenopausal thing that’s gone away with the estrogen patch. The anxiety was definitely one thing, brain fog is another thing. I still kind of struggle with verbal recall, but it is not as bad as before I started on estrogen.  

What advice do you have for other women who suspect they’re going through perimenopause? 

The thing that I found most helpful was educating myself on what perimenopause is and what we can do about it. For me, that was through books, because I’m a book nerd. I read a book called What Fresh Hell Is This? I found that really, really helpful in making the connection between what was going on in my body and the hormonal chaos that I was experiencing. It was very validating to know that I wasn’t going crazy. The other book I found helpful was called The Menopause Manifesto, and that was written by an OBGYN named Dr. Jen Gunter.

Another piece of advice I have – try to find a provider who has really specific, specialized experience in your issue. One of the surprising things I learned throughout my journey is that most medical doctors get maybe an hour’s worth of education on menopause during their medical school training. When I told my doctor, “Hey, I think this is all due to perimenopause and want to go on hormones,” she told me flat out she didn’t have the knowledge to treat me – but to her credit, she admitted this, and gave me a great referral.  

Finally, I want anyone reading to know you’re not alone. Even if no one you know personally is experiencing these things or your doctor doesn’t understand. You can find community from the comfort of your own home. For instance, I found the menopause community on Reddit, which is where the NWHN reached out to me. And now I get to be open about my story in the hopes it will help others. That’s really gratifying.  

Got your own story to tell? We want to hear it!

Our professional editing staff will work with you to make sure your contribution stands out. And don’t worry – we’ll take our lead from you on things like anonymity, important word choices, and accompanying imagery. Let us help you be seen, heard, and understoodPitch us by filling out this short form, or just send us an email with your ideas at [email protected]


The Policy Pages

Updates on how we’re making change at the highest levels of government.

Updates on how we’re shifting paradigms and making change at the highest levels.

The National Women’s Health Network Launches Pilot Program Helping Nonprofit Grassroots Health Organizations Make Change in the Policy Arena

Five community-based organizations to receive funding and technical assistance as part of the new Health Equity & Access Leadership Training Hub, or The HEALTH Program.

***This press release was originally published on February 28, 2023.***

The National Women’s Health Network (NWHN), based in Washington, D.C., launched the Health Equity & Access Leadership Training Hub (The HEALTH Program) early this year. The HEALTH Program is designed to shift paradigms and shape policy by partnering with grassroots health organizations across the nation to:

  • Address health inequities that disproportionately impact historically and systematically marginalized communities
  • Expand health care access through legislative advocacy!
  • Improve health outcomes for women across the lifespan and in all their diversities

The selection process for the pilot program began in June 2022. The NWHN looked for organizations that demonstrated a commitment to health equity and aligned with the Network’s mission, vision, and values. In January 2023, the program launched with an inaugural group of five organizations:

The HEALTH Program’s Inaugural Group
Baobab Birth Collective (Montgomery, Alabama)
Changing Woman Initiative (Albuquerque, New Mexico)
New Voices for Reproductive Justice (Pennsylvania & Ohio)
Oshun Family Center (Philadelphia, Pennsylvania)
Teen Health Mississippi (Jackson, Mississippi)

These organizations provide accessible, expansive, culturally congruent care and services with focuses ranging from community wellness, prenatal care, doula and lactation services, mental health and wellness, sexual and reproductive health education, and reproductive justice advocacy.

The HEALTH Program’s grantee organizations receive both funding and technical assistance from the NWHN, including:

  • $14,000 in unrestricted grant monies for their participation in the 6-month program
  • Professional development from Ms. Byllye Avery, preeminent public health expert
  • Bi-weekly trainings on topics like translating practice to policy, federal advocacy, strategic planning, and sustainable development
  • Exclusive participation in an NWHN-organized and led Advocacy Day on Capitol Hill

“For nearly 50-years, the NWHN’s commitment to advancing reproductive health, rights, and justice has remained unwavering,” said Denys Symonette Mitchell, NWHN’s Director of Federal Policy and founder of The HEALTH Program. “With the introduction of this program, we hope to help emerging and evolving organizations add their voices to the conversation and convert insight into influence on Capitol Hill and beyond by sharing our platform and expertise. Our vision of quality, comprehensive, accessible, and equitable healthcare can only be realized by ensuring an equitable distribution of resources, beginning with our own here at the National Women’s Health Network.”

Network News

Can’t-miss updates from Headquarters.

Can’t-miss updates from Headquarters.

Introducing Laura Tucker, Our New Director of Development

Laura Tucker has more than 25 years of nonprofit and for-profit experience working with national and international organizations to raise brand awareness and fundraising revenue. Laura’s expertise focuses on donor cultivation, building Fortune 500 public/private partnerships, and major gift development. Laura is a highly creative results-driven development strategist with entrepreneurial passion, drive, and vision. Laura has many years of professional experience generating revenue and increasing support bases for expanding national nonprofit organizations. Her experience includes executive and volunteer leadership roles particularly in the sciences and public safety sectors. Laura has spent the better part of her career focusing on creating innovative programs and disrupting how non-profit organizations and corporations engage in fundraising to drive meaningful change. Laura previously served as the Director of Development for the Weizmann Institute of Science in the San Francisco Bay Area and most recently served as the Head of Strategic Alliances for the National Emergency Number Association where she grew internal revenue streams by more than 50%.  Laura is on the Board of 911derWomen and serves on the Steering Committee of the Washington D.C chapter of the Human Rights Campaign.

In Case You Missed It…

By: Adele Costa, Director of Communications
  • Unproven Birth Drug Makena Pulled From Shelves Thanks in Part to NWHN Advocacy – This is a major victory for women’s reproductive health. The NWHN has advocated for years for the removal of this unproven drug – purported to prevent premature births – from pharmacy shelves. We were one of the first organizations to independently examine the PROLONG study data and highlight the drug’s ineffectiveness. We applaud the FDA for taking the steps that ultimately encouraged Covis Pharma to voluntarily pull the product from the U.S.
  • The NWHN Represented Your Interests to the FDA Face-to-Face – On March 1, 2023, Executive Director Denise Hyater-Lindenmuth attended a meeting of the Patient Consumer and Public Health Coalition hosted by FDA Commissioner Robert M. Califf and other FDA officials. At this meeting, the coalition members and the FDA discussed:
    • How to improve the FDA advisory committee process.
    • How the FDA can better regulate tests developed in labs to improve accuracy.
    • The requirements related to the Accelerated Approval Program, an FDA program that allows for the expedited approval of drugs that treat serious conditions.
  • Introducing Monthly Health Pro Tips – Each month, the Network will be putting together a landing page full of the latest science, stories, and strategies related to National Health Themes. In February, we celebrated heart health, HIV/AIDS and sexually transmitted infection (STI) awareness, National Condom Week, and Teen Dating Violence prevention. In March, we’re celebrating human papillomavirus (HPV) awareness, good sleep hygiene, endometriosis awareness, and women’s history month. Visit the pro tips archive here
  • New Health Crossword Puzzles Now Available – Check out our crossword hub for puzzles examining heart health, STIs in older adults, cervical cancer, and more
  • Seven Podcast Episodes Released in 2023 So Far – We interviewed medical experts and people with lived experience on topics like domestic violence, breast cancer, infertility, and more. Click the links below to listen to full episodes, read the blogs, and view exclusive visual content:
  • The Network’s Statement on the 2023 State of the Union Address – The Network applauds President Biden’s multi-faceted health improvement agenda and agrees we must finish the job. Read the full statement here.
  • The Network is Showing Up Strong in the Media – Yahoo Finance featured our introduction of Denise Hyater-Lindenmuth, the Network’s new Executive Director. Our podcast episode on Ohio abortion law was also featured by the UC Center for Public Engagement with Science, and we were cited as an expert in an article about hormone therapy featuring Suzanne Somers.

Young Feminist

Articles by the future, for our future.

Articles by the future, for our future.

8 Things This Disabled Nonbinary Feminist Wants You to Know

By: Carter Ringo

First thing every morning, I do a full body check. I check to see if any of my joints are out, whether my heartbeat is normal, and what my mental state and energy level is like. If I wake up with palpitations, it’s back to bed. If my joints are dislocated, I reset them myself or just continue my day hoping they will reset on their own at some point. The chronic pain, careful energy regulation, and gender dysphoria are just everyday facts of life.

My name is Carter, and I am a disabled nonbinary feminist. I was diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS) in 2014, and there are a few things about my life and my people I’d like to share with you.

1. hEDS is a rare genetic disorder, and a large percentage of the population with hEDS also identifies as having gender dysphoria like me[1].

Mainly, it affects collagen and soft tissue formation throughout the body. Collagen is a protein found in connective tissues, and connective tissues are what holds your body up and in. Connective tissues keep your organs in place, your skin strong, and your joints in socket. Connective tissues are like rubber bands that support your body into the form it is meant to be in, but an EDS-ers body’s rubber bands are filled with holes.  We all know what happens to rubber bands with holes in them: when stretched too far they snap, and over a long time they become loose. Every day I dislocate multiple joints, most often my wrists, hips, fingers and toes. That may sound very bad, but for me at least minor dislocations are just inconveniences. I’m used to it and know how to take care of myself.   

2. At 14 years old, I was told that I would be profoundly disabled for the rest of my life.

That was eight years ago. Being disabled is just the reality of living with hEDS. The hypermobile kind of Ehlers Danlos syndrome is considered the “mildest” medically, even though co-morbidities include POTSMast-cell activation syndromegastroparesis, chronic fatigue, depression, anxiety, widespread generalized muscular pain, and more. I have quite a few of these, and my mobility ranges day to day. However, I am proud that I exist with, and not despite, my disabilities. I have a strong support system and identify with the disabled community. I am also an accomplished artist and advocate, with an amazing partner and cat.  

3. A strict treatment regimen rules my schedule (and my bank account).

Migraine rescue pills, muscle relaxers, pain medication, and a thousand or so supplements make up my day-to-day and a large percentage of my budget. Depending on insurance, these costs can add up to hundreds of dollars per month. Furthermore, the instability in my ribs prevents me from binding my chest and expressing as the gender I identify with, but I find other ways to outwardly signal my trans-masculine identity. I have also had to learn to perform and succeed at a much faster pace than others, because I know there may be a symptoms flare that leaves me bedridden for weeks, in need of intensive interventions, or even hospitalization.  


These are just the daily medications without rescues

4. Very few physical spaces are optimized for people with disabilities.

The Americans with Disabilities Act (ADA) was passed in 1990, and states that public buildings must be created or altered to meet reasonable guidelines for accessibility. As of this year, it has been 33 years since this was passed into law. And yet old cities, especially the one I live in, are known for being widely inaccessible to disabled folks to this day as public monies are diverted from public transportation and infrastructure projects. Further, historic building stipulations and grandfather clauses in the ADA prohibit accessibility improvements in old buildings to preserve history, or do not require improvements if a building was erected on or before such and such a date. This may seem reasonable on its face – but when an entire city was made in the 1800s, and therefore not required to be updated, the only message disabled people get is that old buildings are more important than the living. My body is not public property, but public property and public life should be made for my body. 

5. Disability advocacy can be a slow, frustrating process – and often the work is left disproportionately to disabled folks themselves.

I learned this lesson acutely in college, when I was nearly illegally denied reasonable accommodations my sophomore year. After asking around, I learned I was not alone; most of the disabled people on my campus had also been denied, were not given the accommodations they had been promised, or had to drop out of college because they could not get their wheelchair over the bridge to classes. That’s when I realized this was about more than myself, and sprung into action.  

Despite most buildings being built after the ADA was established, not a single building on my college campus met ADA standards. So, I organized a group of disabled students, and together we demanded that an audit be done to determine what was inaccessible. The audit was done, and experts found that the campus would have to make 10 million dollars in changes or repairs to meet guidelines that had been set for 30 years.

Although this was a vindicating result, I saw very little physical evidence of change as I graduated but was told there was now a “five year plan” to improve things. The president of the college shook my hand at graduation and told me “I did great for the community and made a significant impact on the campus,” but I felt nothing. I did everything I could, but the space was not made with me in mind, and the administration was not willing to change at the rate that was necessary.  

I am at least proud to say some students who were younger than me have continued the work I started. In my most recent visit back on campus, they had finally started offering assisted listening devices for screenings, had seizure warnings, and change was becoming visible. It only took complaints to the department of justice and four years of unpaid advocacy efforts, but I finally saw what good I and others like me had done. 

It should not be a universal experience that accessibility is put on the backburner, considering that ¼ of the US population is disabled, and 1/3 of folks above the age of 65 are disabled[2]. There is no specific data right now on measuring accessibility other than measuring the availability of accessible housing. Considering that, my city is in the top 50 in the country in terms of housing, but the roads, sidewalks, and public buildings are still famously inaccessible.  

“Great work for the community”

6. Disabled people deal with unwanted attention, questions, and assumptions on a daily basis. This has adverse effects on our physical and mental health.

For instance, I was afraid to start using mobility aids because I was afraid that I would be openly judged for being so young. When you are young, and your body does not match the generalized public perception of what disabled looks like, (or what your assigned gender is supposed to look like) you attract a lot of unwarranted questions and assumptions. 

“Why do you use a cane?” I was asked by a security guard in a local museum, “Is it for fashion?” I was leaning on it extra that day as I had walked a while. My partner hooked their arm in mine to keep me steadier as we walked. It was a plain black medical cane with a four-pronged tip – a hell of a “fashion” choice. 

“Let me take you somewhere,” I was told by an older stranger on the street as she grabbed the handles of my wheelchair. I was heading to class and my wheelchair is electric. I did not need help, nor was I asked permission for the extension of my body to be grabbed. 

I am lucky that I have never gotten a “What’s in your pants” type question, but it’s a near universal trans experience. My partner and I make a game out of the side eyes we get from strangers. The last date we went on counted nine odd glances as we held hands and had the time of our lives. Despite the world, we refuse to stop being ourselves and living with joy. 

7. And sometimes, even worse than the unwanted attention, is the common experience of feeling invisible.

Many disabled people will tell you that they are often pushed to the margins, forgotten about, or made to feel invisible in everyday situations. For example, just last week, at a doctor’s office I depend upon for the treatment of my chronic pain, I was totally forgotten about in the clinic’s exam room.   

It was the end of their day, and I waited for two hours to see a Physician’s Assistant for 20 minutes. Eventually, all the lights in the building turned off. I stuck my head out, confused, and had to search for a staff member. The first nurse I found was shocked to know I was still there. I watched her enter the room I assumed the doctor was in and heard a louder than expected “They don’t need to see both providers!” (I had been told to wait for the doctor by the PA) and some hushed words afterwards. I left the office without receiving the care I had paid for and expected. By chance, I met the PA in the elevator on the way out. He was confused, and asked if the doctor had followed his suggestions. I let him know they did not see me and proceeded to fall into a state of panic once I was in my car.

I had done everything I had been told to do while waiting to see my provider and had come prepared with quite a few questions regarding my upcoming top surgery and regular maintenance. Despite my preparedness and my need for quality care, I had this dehumanizing experience at a provider I trusted.  My age and the fact that my disability is fully invisible if I am not using a mobility aid often leads medical folks to triage-file me into “non-urgent” – or worse “lying” or “over-anxious.” I am an incredibly complicated patient with an under-researched condition, but I just don’t look sick enough to receive the health care I need when I need it.


The wheelchair my partner got for me.

8. To me, feminism means freedom, autonomy, safety, and inclusion.

I am a strong believer that everyone has a different experience, and that sight alone tells me nothing about the people I interact with. That’s what feminism is all about to me; the freedom to live and express yourself, the freedom to own your own body and life, without the fear of being harmed or harassed by others. To be considered equal, and to not have to explain my body or my identity to anyone, to be accepted. No one should have to be questioned or expose any information about their body, their medical history, their gender, or their sexual organs in order to get through a day unharmed, and the intersectional feminist movement understands this.  

As a feminist, I understand and own my right to fire any doctor who I feel is not taking care of me in the way I need them to. Some might call this “doctor shopping,” but I call it “self advocacy.” Identifying as a feminist helps me internalize that the problem is not with me, it is with society. The society that sees women and non-binary folk as less-than, and disability as a life-ender. The society that does not believe young people can be disabled, or that people can make good decisions about their care. Feminism helps me own who I am without consigning me to other people’s boxes.

So, hi again. My name is Carter. I am talented. I am successful. I am loved. I have joy. I express myself in unconventional ways. I am disabled, I always will be. And I love my life.

[1] Jones, Jordan T et al. “Gender dysphoria in adolescents with Ehlers-Danlos syndrome.” SAGE open medicine vol. 10 20503121221146074. 25 Dec. 2022, doi:10.1177/20503121221146074 

[2] https://www.cdc.gov/ncbddd/disabilityandhealth/dhds/index.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fncbddd%2Fdisabilityandhealth%2Fdhds.html and https://www.statista.com/statistics/793952/disability-in-the-us-by-age/  

Since You Asked

Answers to your burning health questions.

Answers to your burning health questions.

Question: Is It Safe to Remove an Intrauterine Device (IUD) At Home?

By Carli De La Cruz, Social Media Manager

NWHN member Tiffany asked us –  

“I want my IUD taken out, but it’s hard to get an appointment at my doctor’s office and my health insurance doesn’t cover IUD removal. I’ve seen videos of women taking their IUDs out at home on Tik Tok. Is it safe to remove my IUD at home?”  

While there is some debate over the safety of self-removal of IUDs at home, it is strongly recommended  that you have a medical provider remove an IUD because complications can arise during IUD removal, including: 

  • The IUD getting stuck or embedded in uterine tissue 
  • Part of the IUD breaking off during the removal process  
  • Risk of severe bleeding that could require immediate medical attention if something gets torn during the removal process 

What Are My Options If I Can’t Afford IUD Removal at My Doctor’s Office? 

Many Title X-funded health care facilities (like Planned Parenthood) offer reproductive health services, including IUD removal, on a sliding scale basis based on your income level.  

We hope you found this information helpful. If so, please consider joining the NWHN family by becoming a member here. Have a question of your own? Email us at [email protected]  

The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis, or treatment. All content, including text, graphics, images, and information, contained on or available through this website is for general information purposes only.

Study Snapshots

Readable summaries of the latest medical research.

Readable summaries of the latest medical research.

All Snapshots Researched & Summarized By: Grace Lee (MPH) NWHN Volunteer Health Officer 

Recent Large Study Shows That Regular Exercise Decreases the Risk of Osteoporosis in Postmenopausal Women 

Osteoporosis is most common among aging women. Estrogen helps make and rebuild bones, but as women age and go through menopause, they experience a decrease in estrogen levels and thus, are at a higher risk of developing osteoporosis. Osteoporosis affects approximately 30% of all postmenopausal women in the United States. While this percentage is high, there is promising research suggesting that regular exercise can regulate bone maintenance and improve bone health. A cohort of 30,046 postmenopausal women was divided into two groups: one group indicated a status of regular exercise, and the other group indicated no exercise. The risk of incidence of osteoporosis was measured across both groups. Results showed that postmenopausal women who exercised regularly had a 7% reduced risk of osteoporosis, compared to postmenopausal women who did not exercise regularly.   

Everyone Got More Anxious After the Pandemic Started – But Especially Women  

The COVID-19 pandemic took a toll on the nation’s mental health, particularly in regards to anxiety. A recent study aimed to measure this effect and evaluate the changes in levels of anxiety pre- and post-COVID-19 pandemic onset. Using the Generalized Anxiety Disorder 2 scale, which is a brief screening tool used for generalized anxiety disorder, data was gathered from 1,847 participants. Results showed that overall anxiety increased by 57% after the onset of the pandemic. Furthermore, while there was an increase in anxiety for all genders after the onset of the COVID-19 pandemic, the greatest increases were reported by people identifying as non-male – often twice as high as their male-identifying counterparts 

Women of Different Races Experience Polycystic Ovary Syndrome Differently, Study Suggests

Polycystic ovary syndrome (PCOS) is the most common endocrine disorder affecting reproductive-aged women. Historically, there has been limited data collected on racial differences in emotional wellness in women with PCOS. This study aimed to evaluate how women of different races with PCOS experienced anxiety and depression, and quality-of-life. Through a retrospective, cross-sectional analysis conducted by the University of Pennsylvania, a control group was gathered of women without PCOS to measure against women with PCOS. Each group of women was given demographic questionnaires asking about race, socioeconomic status, psychiatric, menstrual, and pregnancy history. In addition, each cohort was given the hospital anxiety and depression scale survey (HADS) and the modified PCOS survey, which asks questions regarding emotions, body hair, weight, infertility, menstruation, and acne. Race was self-reported. The data from the questionnaires showed that white women with PCOS were more likely to have anxiety symptoms compared with Black women with PCOS. The data also showed that Black women with PCOS had lower quality-of-life scores, particularly in infertility, compared to White women.

Tribute Gifts

The National Women’s Health Network thanks our members for their generous donations.

The National Women’s Health Network thanks our members for their generous donations.

Sheila Attaie In Memory of Shawn Attaie

Paula Block-Levor In Memory of David and Joanna Block

Patricia Bonnard In Honor of Dolores Bonnard

Ashley Bowen In Honor of Ivy Maceika

Malcolm Cameron In Honor of Molly Cameron

Janet Cappiello In Honor of Women everywhere

Catherine Carr In Memory of Kate Bunch

Hannah Clott In Memory of Barbara Trepti Clott

Marissa Cooke In Memory of Liz Westgard

Nanette Cooper-McGuinness In Memory of Rosie Zeisler

Sarah Davis In Honor of Callie Soemaker and Family

Cheyenne Drews In Honor of Of the work y’all do!

Arlene Echols In Memory of Marjorie Echols

John Erdek In Honor of Maryanne Erdek

Andrea Flanders In Honor of RBG

Wendy Forman In Honor of Gail Flackett

Dima Galkin In Memory of Leon Fisher

The Garage In Honor of Julia Parys

Mary Geertsema In Honor of Governor Jim Justice of WV

Carol Gershenson In Honor of Pam Armstrong

Sheila Gholson In Honor of Muriel Mora

R Golden In Memory of Michael Scott Lewis

Claire Gould In Honor of Sarah Sheldon

Zachary Griffey In Honor of Ariana Griffey

Hannah Hall In Honor of Judy Smith

Karen Hammerman In Honor of Ronit Miller

Nora James In Memory of Sarah Weddington

Ashley Jong In Honor of Chloe de Jong

Alison Kailing In Honor of Brenda

Nora Lansen In Honor of Linda Prine

Emery Lapinski In Honor of Jane Lapinski

Petra Liljestrand In Memory of Alice Philipson

Tiffany Mann In Honor of Samuel Alito

Leah Mayers In Memory of Ruth Surgal

Marissa Montjoy In Honor of Emma Lantos

Michael Panush In Honor of Eve Panush

Kylee Pena In Honor of CT Superwomen

Josh Porter In Honor of Stella Porter


Evynn Prichard In Honor of RESEARCH

Laura Punnett In Honor of Judy Norsigian

Virginia Reath In Memory of William Rashbaum MD

Susan Reverby In Memory of Rachel Fruchter

Janet Rosenfield In Honor of Hannah Rosenfield and Andrew Snider

Savannah Rossetti In Honor of Alicia Connors

Andee Rubin In Honor of Cindy Pearson
Cynthia Saunders In Memory of Reba C. Saunders

Kathy Scarborough In Honor of Carly Scarborough

Lorraine Schwartz In Honor of Jolie Giacona

Jamie Simpher In Honor of Jill and Claude Evans

Jeffrey Stroman In Honor of Patricia Munford

James Sullivan In Honor of The a****** who’s been standing in front of the abortion clinic by my house every day for 30 years

Michael Talbot In Honor of Bridget Williamson

Katherine Torres In Memory of Violeta

Catherine Truesdell In Honor of Elizabeth Truesdell

Brooke Vincent In Honor of Karianne Lisonbee

lauren Vreeland-Long In Honor of Amy Aaland

Sarah Wagner In Honor of Angela Hughes Brooks

Katherine Webber In Honor of Helen B Webber

Community Broward In Honor of Cindy Pearson

*Donor is a member of Collective Champions, or giving recognition program for monthly donors. Join today by calling us at 202 682 2648.

If your name is missing, incorrectly listed, or misspelled, please accept our sincere apology and contact our Development Department at 202 682 2640

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