A Woman’s Health Perspective

I was 17 when my gynecologist told me I didn’t have a uterus – that I was born without one, in fact. Confused and angry, I wondered how this could have happened. How can I just not have one? I was missing a vital organ of the reproductive system.

I soon learned that the condition was called Mayer-Rokitansky-Küster-Hause syndrome (MRKH). It affects 1 in 5,000 women and one of the first symptoms is primary amenorrhea (the absence of menstrual periods). This is what prompted me to go to the gynecologist’s office at 16 years old. I was concerned that I hadn’t gotten my period yet, not even a little bit of spotting.

They first put me on hormonal birth control for three months to see if that would induce bleeding or menstrual symptoms. It didn’t. When the three months were up and nothing had changed, I was taken in for an ultrasound to see what was going on. That’s when I found out.

I was diagnosed with MRKH syndrome. They said there was no primary cause, but strong indicators pointed to a genetic factor. MRKH syndrome happens when the reproductive system doesn’t develop in the womb properly. Because of this condition, I will never be able to get a period or have a pregnancy or experience childbirth. This also means that I have a shortened vagina (because it didn’t develop properly) and I would have to use a special tool called a dilator to help me “create a wider opening.”. Without this tool, sex would be impossible. In some more severe cases, some women opt to get surgery to help. I have decided to wait and only go that route if in the future I feel the dilator won’t work.

Learning all of this at 17, before I even graduated high school, took a big toll on my mental health. I went to therapy and tried to cope with all my feelings. I searched the Internet to find support groups. I cried and got angry, too.

I think one of the hardest parts of having a rare disease is the fact that nobody can understand how you feel, except yourself. Nobody will ever be able to say the right thing. I’ve heard people say, “Well, at least you don’t have to deal with your period,” or “there’s always adoption or surrogacy.”

That maybe be true, but for me, it’s not about being able to have biological children or about getting to experience a period. It’s about the fact that a part of me is missing. A part of the body that most women have – but I don’t – and because of this, sometimes I feel like my body betrayed me, and I am not normal. It’s about the emotional aspect of having something missing. And it feels as if nobody understands that. But I understand it. And if another woman told me the same thing, I would know exactly how she felt.

I am 19 now, and this is still something I am coping with. I believe there is an underlying reason why I have MRKH syndrome, whether it be genetic or some other health condition that influenced this one. I was born with a lot of serious health conditions, some of which developed while I was in utero.

There is still a lot I don’t know about MRKH syndrome and want to continue to learn. I know there are going to be a lot of ups and downs throughout my life.

I want to connect with other women out there who have been diagnosed with the same thing, to support each other but also find connecting factors as to why so many women have this condition.

I am not ashamed. This is the first time I am speaking out about it, and only a few close family members of mine know. There is nothing wrong with having this condition, and it is not something that could have been prevented.

Published May 10, 2023

Twenty-six years ago, I was diagnosed with Graves’ disease with exophthalmos (defined as a bulging of the eyes). Prior to this autoimmune disease diagnosis, I was always struggling with breathing issues and asthma. During my diagnosis, because I was such a severe case, we tested my twin sister too, and she was diagnosed with slight hypothyroidism.

It was difficult navigating during the late 1990s, becoming a teenager and battling health issues. I was 12 years old and being made fun of for having “bug eyes”, but no one knew I had a health issue. Fortunately, I had a supportive family and twin sister, which made things easier to cope with at such a young age. A couple years later, at the age of 14, when none of the medications I was taking were working, I had a complete thyroidectomy. Since then, I have been managing asthma and different phases of the autoimmune condition. In dental school, I thought I was going blind, but I was soon told I had “severe dry eyes” from allergies. All my eye issues from 2000-2015 were diagnosed as severe allergies. I plugged my tear ducts to help, and symptoms were improving, so I went about my journey of becoming a dentist.

I became pregnant in 2015 and it was then that I was finally diagnosed with an acute phase of thyroid eye disease (TED). To say I was surprised and shocked is an understatement. I have had TED since age 12 but I wasn’t diagnosed until 2015, when the disease was at its worst. My only options at the time were symptom management until 2020, when I received the first treatment approved by the U.S. Food and Drug Administration (FDA) for TED, treating it at the source of the condition. Soon, though, I became part of a subset of people that was affected by the manufacturing of the COVID vaccine in 2020. The Defense Production Act, which was invoked during the pandemic, allowed the government to halt the production of several infusion medications, including my TED medication, so they could manufacture the vaccine.

During this time, though, I became an advocate for myself. I reached out to several non-profits to understand what my rights were. I attended and spoke at webinars. I have learned so much from participating in different programs for TED patients, such as the Art Therapy Program from Prevent Blindness.

Prior to the diagnosis, I was already going to therapy. In the middle of all my health issues, my son’s health took precedence, as we found out he has a rare congenital condition called anorectal malformation. Life as a woman is tough, but if we become more open and transparent about our struggles, we won’t feel “alone”. It is hard not to compare, but if we include all our stories and not compare them, I believe this would make life easier and happier. Normalizing that it is okay to not be “okay” shows vulnerability and thus connects us as humans. Connection, inclusivity, and awareness allow people to see what’s real – and not what social media perceives as real.

I want to help empower women with any conditions, whether health or mental conditions, or through challenging life circumstances. I want women to know you can have it all, but communicating your needs is key: ask for help, rely on others when you need it, and reveal your expectations so others can meet these needs. It is so important to not foster resentment towards your disease, or towards your support system. This is why I want to share my story, my struggles, and my life. A disease may try to define you, but I know that only I can control what defines me. Whether my thoughts, my actions, or my expectations – the common factor is me.

Layla is a member of the SWHR Eye Health Working Group. Published May 8, 2023

I grew up in a rural community, so I sought out my preventive screening health at a Planned Parenthood a few towns over. I wanted to take charge of my health at a young age so I could make important decisions, but I felt like I wasn’t getting all the necessary information I needed from other providers. One piece of information I was missing was that I didn’t know the impact the human papillomavirus (HPV) would have on my life.

At the age of 24, I was diagnosed with my first abnormal pap test and referred for a colposcopy. The provider stopped and referred me to a gynecologic oncologist. Hearing the word “oncologist” didn’t register to me as potentially having cancer. I also didn’t understand that my abnormal test results were because of HPV-16, a high-risk type of HPV. No one really talked about it.

That all changed on February 4, 2015, when I was diagnosed with endocervical adenocarcinoma in situ (AIS), which happened to be World Cancer Day. I knew the universe had a way of sending us messages, but I was not prepared for this life-disrupting event. At the time, I was working at a small dental office as a chairside assistant and front desk receptionist. We had a small team, and I had to take a lot of time away from my job between testing, chemotherapy, and radiation. I was also enrolled in school to become a social worker. I wanted so badly to help other people going through tough moments in their life, and then I was given mine to experience first. Through all of this, I remained in school full-time and tried to work as close to full-time as possible – because I was living paycheck to paycheck. I felt like I could hide that I had cancer because this treatment didn’t take my hair. I still lost weight and was extremely pale, but no one could tell I had cervical cancer.

After being in remission for nearly six months, I felt like I was starting to piece together my life again when they found suspicious nodules in my lungs. It was back to more testing: a referral to the infectious disease specialists, needle-guided biopsies, scans, endoscopic biopsies, and bloodwork all to come to the conclusion that my cancer had returned and metastasized to my lungs. This was my fight or flight moment, and it was then I decided to seek a second opinion.

After a second opinion, I sought additional treatment. I lost my hair after my first treatment, including my eyebrows and my eyelashes. There was no hiding it now. I started to feel defeated as my body was taking longer to produce the necessary immune responses to receive my next treatment. I just wanted to be done. When it came time for my first scan after having three treatments done, something miraculous happened: there was no evidence of disease! I couldn’t believe it!

It wasn’t until after my treatment fully ended that I found a patient advocacy and support community. I didn’t know it then, but Cervivor (a nonprofit for cervical cancer survivors) would ultimately transform my life and help me grow into such a strong advocate in the cervical cancer space. I found a community of several women from across the states who experienced things similar to me, and I learned how my story mattered to a collective of others. We could make a difference! Throughout the next few years, I would experience a plethora of post-treatment side effects, but this time I navigated it with the help of guidance from the community. It was life-changing! I grew with this organization and became a multi-award-winning patient advocate and now I work as a social worker for the organization that gave me my voice.

I’m proud to say that I’m walking into my seventh year of no evidence of disease. While I am grateful for my opportunity to live out my life the best way I can, I realize just how fortunate I am because it hasn’t been the story for many others. My oncologist explained that nearly 6-9% of women in my circumstance will have a complete interval response (the disappearance of all signs of cancer in response to treatment) while many others will live with their cervical cancer by maintaining with chemotherapy until they succumb to the disease. Through my years of advocacy, I see firsthand that we lose too many women to this disease that can be prevented and detected early. My plea: please get your regular screenings!

Morgan’s story also appears on the Cervivor website here. Published May 8, 2023

I thought that I was perfectly healthy until age 54. I worked full time for 35 years in the technology industry as a programmer analyst, project manager, and system engineer.

One day at work I remember experiencing a sensation that I had never had before. It felt like a strobe light had gone off in my brain. I tried to push it aside and concentrate on the task at hand.  Eventually, the sensation subsided. I later described it to my physician, who diagnosed me with anxiety. Two months after the initial episode, I went to the emergency room with stroke-like symptoms and a severe headache. A brain computerized tomography (CT) showed an intercranial atypical meningioma that was causing hydrocephaly – an abnormal buildup of fluid in the cavities within my brain. Doctors sent me for a procedure, and I had a successful emergency craniotomy.

Two years later, I am doing pretty well overall. Since my headaches and surgery, I have been diagnosed with cervical cancer and an autoimmune thyroid condition called Hashimoto’s. I now receive an annual brain MRI to detect regrowth of the meningioma, which was causing the strobe sensation and fluid buildup in my brain. While the cancer diagnosis was difficult, the toughest women’s health issue for me has been my Hashimoto’s. It was not diagnosed by my physician, so I had to refer myself to an endocrinologist to receive the diagnosis.

I also occasionally have trouble with my eyes, but I don’t yet know whether the symptoms are thyroid eye disease or not. I am seeking feedback from an eye doctor.

I am sharing my story so other women understand how quickly our health can change and that sometimes being your own health advocate is a role that everyone, and women especially, may have to take on at some point. Trust yourself and persevere until you understand your underlying health issues.

Published November 29, 2022

On an August afternoon, at the age of 49, without any warning, I became engulfed in a maelstrom of insanity that spanned 17 days and nearly destroyed me. Had it not been for a loving rescue by friends, an artful diagnosis by an extraordinary psychiatrist, and an incredible amount of luck, I doubt I would have survived. Yet, my diagnosis was only a blood test away.

It was the gradual, almost imperceptible shift in my hormonal balance that made it hard to understand the cause of the changes that were happening to me. I just wasn’t feeling right. I suffered from a number of vague physical symptoms. Sometimes I would feel a crawling sensation up and down my legs, as though there were something moving under my skin. I experienced tingling and numbness in my fingers, and there was a feeling of pressure in my lower abdomen. I even began to experience irregular periods, but no one, not my internist or my gynecologist, ever raised the possibility that hormone changes connected to menopause might be at the root of my symptoms.

I was surprised that I never experienced ‘hot flashes,’ which are typical perimenopausal symptoms. Instead, it seems that estrogen deficiency can be a factor whether or not there are any other recognizable symptoms. If anyone had suggested that my delusions were triggered by a mundane biological event, I would not have believed them. Although I was educated, well-read, and medically aware, I had never heard that a hormonal imbalance could wreak such havoc on the brain.

I have learned that perimenopausal depression is a psychological disorder that can be biologically triggered. There are endocrine signs that can be evaluated. Hormone therapy can help to address some of the symptoms, as it did for me. Estrogen replacement to correct my hormone imbalance enabled my recovery, and the psychoanalytic setting helped me to separate out the physical factors from the psychological ones.  Aside from my family, I have never shared the most important information that resulted from my ordeal, which was discovering that my mother suffered a severe clinical depression at the same age as me. Unfortunately, my mother was subjected to electroshock therapy since perimenopausal depression would not have been on anyone’s radar at that time.

I now realize that I am one of those women who is predisposed to complications from the loss of estrogen, even though I was never depressed. Not only was my energy level high, but to the casual observer there was nothing remarkable about my behavior. It appears that throughout the 17 days of my delusion, I manifested symptoms in a manic phase. Today, I understand that what I needed and what worked for me was a short term estrogen replacement, and this has given me back a life free of the trauma I lived through.

Published August 29, 2022

Let’s begin with my menopause symptoms: night heat with my temperature rising but no sweating, bone density problems, very high cholesterol, weight gain, and heart palpitations. Sometimes, I could not even breathe white sitting on the couch. I was 65. So, I got a new primary care doctor, a gynecologist, and cardiologist, and tried women’s hormones.  

After a few years, I finally have the whole combination of different supportive medications, hormones, and supplements in an ideal place and feel fine. All is working well, I feel great, and I am balancing minimum dosages on each of these supportive tools. I also have thyroid issues but that, too, is going well. What a difference a day makes!  

The hard part now is that there is no central place to connect to get all the parts together when it comes to menopause care. It took me four years to put all the pieces together for my own health—and I have been a laboratory director and medical technologist for 40 years. It would be great to have a central care hub for menopausal women to address all the symptoms so that they can find relief quickly.

Published August 25, 2022

Like most new moms, I didn’t expect to have problems breastfeeding, especially since my husband and I are primary care providers. If anyone had resources at their disposal, it was me.  

Yet, breastfeeding my first child was a nightmare, and I struggled mightily. My breastfeeding journey landed me in the emergency room with fever and mastitis, a painful inflammation caused by blocked milk ducts that affects one in 10 women who breastfeed.   

Desperate for help, I resorted to paying out of pocket for a lactation consultant to provide guidance and support to get me through one of the toughest times in my life. I recognize the privilege of being able to pay several hundreds of dollars for a single consultation with a lactation provider, an option many women don’t have. Still, it didn’t seem right for this to be necessary for anyone.  

After the frustrating go with my first child, and another terrible struggle with my second child three years later, I began searching for answers. How could finding help be so difficult and expensive, when families are following their provider’s recommendations?  Why is breastfeeding promoted if there isn’t enough accessible support to succeed?    

I found that despite the clear research identifying current barriers for breastfeeding families, and additional evidence showing what interventions actually work, nobody seemed to be using these to address the problem. So, I set out to do it, applying technology, the use of video visits, also known as telehealth, to mitigate the one variable unsolved – a shortage of trained support providers.    

Further, my efforts led me to realize that, since 2012, breastfeeding support had been labeled a “preventive service” under the Affordable Care Act for which almost all insurance companies were required to cover. Despite these legal mandates, insurers weren’t covering it at all, leaving parents to fend for themselves in the weeks that are most crucial for breastfeeding success.   

This did not sit well with me, so the gloves came off and I started fighting. Insurers were a big hurdle, but there were others, too.  

The very people trained to help families, lactation consultants, were not only in short supply, but were siloed from the health care system, creating a huge gap in maternal-child health care. There are currently fewer than half the number of International Board-Certified Lactation Consultants (ICBLCs) per 1,000 live births in the United States than the Surgeon General recommends. Together, these factors cause significant hardship and lead to early breastfeeding termination.  

Determined to change the system, I set out to create a way for parents to access evidence-based breastfeeding support, aimed at improving success rates, without having to worry about the cost. That’s when I founded the telehealth platform, Nest Collaborative. Five years later, we are fully executing on my mission: ensuring all families have early and evidence-based access to comprehensive breastfeeding support regardless of socioeconomic status, location, or feeding choices.   

Today, I continue to advocate for families, so they have access to the care they need. 

Published August 25, 2022

I’m a 29-year-old living with three “invisible illnesses:” Crohn’s disease, polycystic ovary syndrome (PCOS), and endometriosis. Chronic pain has been a part of my life since I can remember, but I didn’t get diagnoses for my conditions until I was 19, 28, and 29, respectively. Like many others, my journey has been expensive and arduous, and it isn’t over.  

As a young girl, I always had stomach issues. I would eat something and less than an hour to 24 hours later, I would have terrible stomach pain and diarrhea, and I would be sweating and puking. Sometimes, I would have eaten the same thing as the rest of my family but would be the only one sick. Doctors both in Nigeria and America told my parents and I that I simply had a sensitive stomach. At 14, I started school in the United States and started getting sick very often. I had my first ovarian cyst when I was 15, and then started having pelvic pain on top of long, heavy, painful periods. My primary care provider (PCP) told me that it was all in my head and due to my weight fluctuations, so he wouldn’t do any further tests. The gynecologists put me on birth control pills. Nothing improved and I was shamed often for being so sickly because “it was all my fault.”  

By 19, I had been to emergency rooms (ER) and doctors’ offices often. Sophomore year of college, the ER visits had gotten so frequent and the stomach pain so bad that my PCP referred me to a gastroenterologist. They found that my gallbladder wasn’t working properly and needed to be removed. Once that was done, they called me back to tell me that they noticed blood in my stool and some other things that needed to be observed by a colonoscopy or endoscopy. Then they discovered that I had ulcerative colitis. They suspected I’d probably had this since I was young. Let me tell you, I almost cried out with relief. Finally, I wasn’t crazy. People would listen to me and see that it wasn’t me ruining my health. There was something else going on. 

I struggled a lot in my junior year of college but made it somehow. At the end, I went back to the gastroenterologist in worse pain. I underwent a pill camera and found that I had Crohn’s disease. I remembered that my PCP had brought this condition up at one point but discounted it because I didn’t have one of the common symptoms: weight loss. I was “too big” to be a person suffering from Crohn’s, he thought. This is something that I still hear today, along with “you don’t look sick.”  

I was put on a new drug in 2016—after years of various medications, hospitalizations, home remedies, and diets didn’t work. Five years later, I hit remission! The new drug has been life-changing, both positively and negatively. It does make it harder for me to fight infections, so I get sick very easily and take much longer to recover. Sometimes, a round of antibiotics isn’t enough and I need steroids to help my immune system.  

While I was dealing with Crohn’s, the pelvic pain never went away but the gynecologists never knew what caused it. PCOS and endometriosis were mentioned a lot, but I didn’t have two of the common symptoms, so they were discounted. Their solution was to try different birth control pills and then an intrauterine device (IUD), which made things worse. The gynecologist at that time gave me strong painkillers and ‘called it a day.’ After eight months, I found another gynecologist who removed the IUD and had me try a different IUD. The pain remained, but I wasn’t getting periods. This gynecologist told me that if the pain didn’t send me to the hospital, then it really wasn’t that bad. It took two more years of pain and imaging due to my Crohn’s disease to force my gynecologist to do further testing, only to discover that I indeed have PCOS. She told me I needed to lose weight and put me on a new drug. This ruined my body and made it difficult for me to work. Instead of sticking to my old pattern of dealing with it, in two months I sought out a second opinion from an endocrinologist. She took me off the drug immediately and we came up with a plan together that has been helping me. I had taken the time to do thorough research and find a new gynecologist. At the end, she solved the mystery of the pelvic pain: endometriosis.  

Currently, I’m dealing with a bunch of negative side effects from trying different meds. But I’m being gentle with myself. That’s really the biggest thing for me now. Be it taking naps, staying in on weekends, or eating microwaveable vegetables instead of fresh veggies on days when I’m too weak to cook. I’ve also added a primary care nurse practitioner and a chiropractor to my medical team; they have been great additions. All the things that I had previously been told “didn’t exist” by past health professionals, they’ve confirmed exist and are trying to assist me in dealing with them.  

My advice to others is to listen to your body and don’t give up. You have to be your champion, your advocate. It’s your life, fight for it. Then, find a health care professional that listens to you and also doesn’t give up. This journey isn’t a straight path. Science still has a lot to figure out about women’s health. Yet, it is ever evolving and I believe one day it will solve all those mysteries.  

When I get sad or frustrated about my situation or every setback, I think about the saying “into every life some rain must fall”. All one can really do is weather out each storm and come out stronger each time.  

Published August 25, 2022

I have always been career-driven and did not want anything to get in the way of my professional opportunities. After completing my PhD at the Massachusetts Institute of Technology (MIT), I looked around and felt like I had been left behind in the dating world. It seemed like everyone had gotten married while I was in the lab. 

Just before my 35th birthday, I scheduled egg retrievals as an insurance policy, sure that I would find someone eventually. The process was set to start days after I was running the Boston marathon. I was devastated when they only harvested two eggs. Only then did the doctor mention that the hormones dissolve in fat and I did not have enough in my stomach where I had been giving myself injections. I sat stunned at how this could be a revelation to anyone. So, we did another round with better, but still mediocre, results. Then, I signed up for my third round of retrieval, and the doctor mentioned we would have to wait a month for my body to recover. I asked why we did not follow that between the first two rounds, and he said, “Oh, well that should not have happened.” The process is horrific. I was giving myself shots in my triceps, which involved balancing an adjustable wrench so I could pinch the skin properly. Going through these gymnastics alone each night was about the best reminder possible that I was truly alone, having to do this because I had not found a partner. The trigger shots taken prior to retrieval come in blunt syringes where one has to twist the needle to puncture the skin. The levels of hormones pumping puts one through the darkest, drastically emotional states.  

A few years passed, and the prospect of finding someone faded further. I began shopping for sperm. A surreal experience, I found myself deciding all sorts of genetic components for my children. Still unwilling to give up the idea of a husband, I fertilized half of my eggs with the donor. None became viable embryos. With money and faith running dry, I fertilized the rest with the same donor. Three embryos grew. Genetic tests showed one mutant and two girls, and I had the two viable embryos implanted together. The first 13 weeks, intramuscular injections and invasive intravaginal probes were the cadence of my life. After being released to an OB-GYN, I did a lot of my own research, as many doctors are still not up to date on the needs of a multiple pregnancy. The c-section date was set, as twins are not allowed to go to full term, and my little ladies were removed. One was quickly brought up to the newborn intensive care unit (NICU), and I spent a few minutes with my other daughter until she was whisked away. My uterus was so large it could not shrink down properly and instead filled with blood clots. The nurses notified a doctor, who came in and got my permission for a blood transfusion as I had lost 2.5 liters of blood.   

Today, two tiny versions of me lie together in their crib and sing in unison “I love you momma!” Raising twin two-year-old girls in a global pandemic without any support has been madness, but when I close their door blowing good night kisses, nothing else matters. 

Aside from health care and backup care, I have not received any support from work. As a line manager myself now, I would suggest leaders keep these few things in mind: it is a ridiculously draining journey, so keep open communication and give your direct report(s) space to step back, if necessary. I was flagged in my company’s human resources system because I was out of the office so often for appointments and surgeries, so allowing people to work from home during these procedures would be beneficial so that they can arrange their work around the appointments and for days when the medication makes them physically ill. For those higher in the organization, I would suggest looking into medical policies that cover not only the medications, but the surgeries for IVF as well. It could be a key differentiator for attracting and retaining female talent.

Published August 25, 2022

SWHR spoke with Tammy Anderson, an advocate and volunteer with Wake Up Narcolepsy, about her journey caring for her child with narcolepsy. Read the blog post capturing takeaways from the conversation.

Published June 14, 2022

Esther Melvin, cancer patient advocate and survivor, wrote a guest blog post about her experience with cryoablation treatment, for SWHR. Read the blog post.

Published April 12, 2022

SWHR spoke with Juana Mata, a patient advocate and co-founder of Looms for Lupus and Mata Advocacy and Support, about her journey with lupus. Read the blog post capturing takeaways from the conversation.

Published March 23, 2022

Sarah Gorman, patient advocate and president of the Alliance of Sleep Apnea Partners (ASAP), wrote a guest blog post about her sleep apnea diagnosis for SWHR. Read the blog post.

Published March 18, 2022

SWHR spoke with Sara Stamey, author of Pause and The Rambling Writer blog, about her journey with menopause. Read the blog post capturing takeaways from the conversation.

Published January 28, 2022