Wellness

Women’s Diseases and Disorders Are Criminally Underfunded

Photo Credit: Branislav Nenin/Shutterstock

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It’s no secret that women have to overcome a number of obstacles when it comes to life in general. We typically make less money than our male counterparts, many of us face sexual harassment, and we tend to be underrepresented in both political offices and the media. But, many may not realize the issues we face when it comes to receiving equal medical care.

Unfortunately, it is common for women to face discrimination in the doctor’s office. Chronic pain, which can be an indicator of serious medical issues, can often be dismissed or even mocked by medical professionals. Women can be gaslighted by doctors who try to convince them that their issues are all in their heads. This discrimination can lead to years of struggles with lack of diagnoses and/or misdiagnoses. These obstacles can prevent women from receiving proper medical treatment for close to a decade in many cases. And, these issues tend to be even worse for women of color. 

It is surprising and even disturbing to learn about the lack of education and knowledge in the medical community when it comes to diseases and disorders that solely affect women. Women’s diseases and disorders can typically cause infertility, among a host of other issues. However, even though infertility is typically only one of a myriad of symptoms, these diseases and disorders can often get lumped into the category of infertility disorders and are then seen as a luxury to treat by our medical system in this country. The obstacles to treatment pile up.

I suffer from two such female-affecting disorders, polycystic ovary syndrome and endometriosis. 

Polycystic ovary syndrome (PCOS) is a hormonal disorder that is common among women of reproductive age. Women who suffer from PCOS commonly have infrequent or prolonged menstrual periods and/or excess levels of male hormones (androgens). Their ovaries may develop a number of small collections of fluid (cysts) and can often fail to regularly release eggs. One of the symptoms that women with PCOS face is infertility. Others include hair loss, severe acne on the face and body (typically cystic), weight gain that is hard to control or manage, excess body and facial hair, and even mental health issues like depression. If untreated, PCOS can cause insulin resistance or even Type 2 diabetes. Add all these issues together and PCOS can be pretty detrimental to a woman's health and life.

I suffered from PCOS symptoms from the time I was 10 years old but was not officially diagnosed until 15. But, even after I was diagnosed, many of my symptoms were left untreated and my PCOS was largely unmanaged. My doctor simply put me on birth control pills to regulate my period and sent me on my merry way. It wasn’t until I was 26 and sought out a PCOS specialist, who happened to be a fertility doctor, that I received actual treatment for the myriad issues I was facing, which were negatively impacting my life in a severe way. I was experiencing extreme weight gain no matter how much I restricted my food intake, cystic acne that made it difficult to go out in public and left me with scars, hair loss, and insulin resistance. 

When I finally received treatment from a doctor who actually understood PCOS, I was surprised that my issues had been neglected by my other physicians for over a decade. Because many women with PCOS can be overweight, we don’t always receive the respect we deserve. Oftentimes, we can be told to just lose weight and we’ll be fine, despite the fact that weight loss alone will not always ease the symptoms of PCOS. And, this is easier said than done when you’re up against a disorder that makes it nearly impossible to drop any pounds. Even my PCOS specialist fat-shamed me at any opportunity, adding insult to very real bodily injury. It’s unknown whether PCOS is caused by weight gain or if the weight gain is caused by the PCOS. Also, there is no known cure for PCOS at this time. This lack of understanding is due to the extreme lack of funding and research that this female-affecting disorder receives.

When I finally received treatment from a doctor who actually understood PCOS, I was surprised that my issues had been neglected by my other physicians for over a decade.


I’m not alone. PCOS affects 6% to 12% of U.S. women of reproductive age, which is around 5 million American women, with a worldwide prevalence of up to 21%. But, because the symptoms are often ignored or misdiagnosed, the number could be much higher. Due to the lack of funding and research, the exact cause and course of development of PCOS are still unknown. Which, of course, adds yet another obstacle to treatment when the cause can’t even be determined. 

According to a study published in The Journal of Clinical Endocrinology & Metabolism in 2017, PCOS research is demonstrably underfunded, especially considering its “prevalence, economic burden, metabolic morbidity, and negative impact on quality of life.” The study compared PCOS funding to that of rheumatoid arthritis, tuberculosis, and systemic lupus erythematosus, three other disorders that have similar — or lower — degrees of prevalence, negative impact on quality of life and mortality. The research funding for PCOS when compared with RA, TB, and SLE was determined to be “relatively less funded.” The total mean 10-year funding was $215.12 million for PCOS vs $454.39 million for RA, $773.77 million for TB, and $609.52 million for SLE. All three comparator disorders received between 2- and 3.5-fold greater funding than did PCOS during the period of study. In addition, the study found that more individual Research Project Grants were awarded for RA, SLE, and TB than for PCOS. 

So, why is PCOS so underfunded? The most likely answer, while disappointing, is hardly surprising. “I think there has been limited interest because it only affects women,” wrote Dr. Richard Legro at the Pennsylvania State University College of Medicine, whose research on PCOS has been published in Endocrine Reviews.

Now, let’s talk about endometriosis, another female-affecting disorder I also suffer from. Endometriosis is a disorder in which tissue similar to the tissue that normally lines the inside of the uterus, the endometrium, grows outside of the uterus. This endometrial-like tissue in turn continues to act like the regular endometrial tissue, in that it thickens, breaks down, and bleeds with each menstrual cycle a woman experiences. However, because this tissue has no way to exit the body, the way normal endometrial tissue inside the uterus exits during the menstrual cycle, it becomes trapped. As a result, the surrounding tissue can become irritated and can eventually develop into scar tissue and adhesions (bands of fibrous tissue). The scar tissue and adhesions can cause pelvic tissues and organs to stick to each other. The exact cause of endometriosis is not yet known.

Endometriosis commonly causes pain, many times severe pain, especially during menstrual periods. Many women who have endometriosis suffer from chronic pain that negatively impacts, or even prevents their ability to carry out, normal functions like going to work, using the bathroom, or even having sex. This pain can be so intense that it makes living a normal life impossible, and not just during menstruation. Other symptoms include nausea, fatigue, diarrhea, constipation, and bloating. And, of course, endometriosis can also cause infertility.

In addition, endometriosis can cause the affected organs to stop their proper functions, as the tissue is altered by the endometrial-like tissue cells. As a result, endometriosis can cause a number of symptoms that can lead to many different misdiagnoses. For instance, when endometriosis affects the bowels, the symptoms will mirror those of Irritable Bowel Syndrome. But, when a woman is treated for IBS instead of endometriosis, she will simply be addressing a symptom and not its cause, leaving the endometriosis undiagnosed, and oftentimes expanding and worsening. An obstacle women face in their journey toward an endometriosis diagnosis is the fact that it can only be officially diagnosed through surgery. 

Surgery is also the primary method of treatment, where as much of the affected tissue is excised as possible. Any endometriosis cells that are left in the body can multiply, causing the cycle to repeat itself. This often means an endometriosis patient will have to undergo multiple surgeries throughout the years. Some symptoms can be managed through hormonal interventions like the birth control pill or an IUD. However, there is not yet a cure for endometriosis.

Endometriosis, like PCOS, impacts millions of women. It is estimated that at least 11% of women, around 1 in 10, of reproductive age suffer from endometriosis. This equates to more than 6.5 million women in the United States alone and 190 million globally.

 

I have dealt with endometriosis symptoms since I had an unrelated surgery at the age of 15. However, I was not diagnosed with endometriosis, despite showing symptoms during subsequent surgeries, until I was 29. By that point, I was constantly in severe pain and was unable to hold down a job or really even leave the house for long periods of time. I had received multiple misdiagnoses. My most recent surgeon at that time, who was a supposed “endometriosis expert,” even assured me that I did not have endometriosis. This greatly delayed my eventual diagnosis and treatment. After being denied treatment by multiple doctors and almost losing hope, I was left on my own to research my illness. That led me to one of the foremost endometriosis specialists in the world, who scheduled a much-needed surgery. Despite the fact that he was one of the only doctors in the world who could successfully complete this surgery without a hefty risk of causing further complications, including death, my health insurance considered this surgery a luxury and refused to cover it. This surgery gave me my life back, albeit at a huge financial cost.

Endometriosis, like PCOS, impacts millions of women. It is estimated that at least 11% of women, around 1 in 10, of reproductive age suffer from endometriosis. This equates to more than 6.5 million women in the United States alone and 190 million globally. However, due to the fact that endometriosis can only be officially diagnosed through surgery and the symptoms are often dismissed or misdiagnosed, this number could potentially be much greater. Even so, endometriosis is one of the diseases and conditions that receives the least amount of funding from the National Institutes of Health. According to the National Center for Biotechnology Information, “Endometriosis research is underfunded relative to other diseases with high health care burdens.”

Endometriosis, like PCOS, faces underfunding most likely due to the fact that it is a female-affecting disorder. “The truth is that women have been very understudied over the years… it’s really kind of shocking; it’s actually worse than you think, not better than you think,” according to Dr. Judy Regensteiner, the director and co-founder of the Centre for Women’s Health Research at the University of Colorado Anschutz Medical Campus. 

Luckily, there has been some progress in recent years when it comes to endometriosis research funding. In July 2020, an amendment to double federal research funding for endometriosis, from $13 million in 2019 to $26 million for the fiscal year beginning Oct. 1, 2020, was approved by the U.S. House of Representatives. Congresswoman Abby Finkenauer of Iowa, an endometriosis sufferer herself, led this charge. But unfortunately, there is still significantly more work to be done to secure more funding, research, education, and treatments for endometriosis.

Of course, it is important to remember that not all people who have a uterus identify as women. So, not all of the people who suffer from what have been deemed “female-affecting disorders” identify as women.

Women, and people who have a uterus, face uphill battles when it comes to receiving proper medical care. However, it is important that you not give up in the face of these obstacles. Sometimes this means you will have to become your own advocate and do your own research. The correct diagnoses and treatments are out there. And, hopefully, the right doctor who can help you is out there, too. Don’t be bullied into accepting less than you deserve, especially when it comes to your health and medical care. A better life could be waiting for you on the other side. I’m living proof.








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