Post by Nadica (She/Her) on Oct 29, 2024 1:59:20 GMT
Why aren’t public health officials telling people about the fertility cost of COVID-19 and Long COVID? - Published Oct 28, 2024
by Lydia Wilkins
“Come back to me when you start wanting children,” my gynecologist said. I had asked about the implications on fertility, thanks to my Poly-Cystic Ovarian Syndrome (PCOS) diagnosis — and was dismissed once again. It enveloped me with such despair.
For over two years I was shunted between varying medical offices, from primary care to an STI clinic. Among many disabling symptoms, I was experiencing hair loss and excessive hair growth along my jawline since my SARS-C0V-2 infection. After developing Long COVID in March 2022, doctors considered me a “medical curiosity” and tested me endlessly, leading to wrong diagnosis after wrong diagnosis. I was prescribed medication after medication, but nothing seemed to help.
Eventually, I added another diagnosis to my chart when I was diagnosed with PCOS by a gynecologist. The hormonal condition is lifelong, presenting with symptoms such as excessive hair, hair loss, fatigue, and irregular periods. The World Health Organization recognizes PCOS as a leading cause of infertility; you are also at risk of other conditions such as diabetes. The gynecologist additionally said there was a possibility that I have endometriosis, in which tissue from the uterus grows in places where it should not be. Endometriosis is recognized for extreme levels of life-impacting pain and is also associated with infertility.
The impact of Long COVID on sexual health is still not fully known, but there are serious signs of sexual and reproductive health being impacted. To be a disabled woman who has to advocate for herself, with the research, in the face of medical indifference is beyond exhausting. At every stage, I have correctly diagnosed myself, while specialists would play “catch-up.”
Why are medical experts and public health officials not sounding the alarm, to warn the public about the impact of Long COVID on fertility?
Like COVID-19 which leaves inflammation in its wake, PCOS is also thought to be an inflammation-related condition. PCOS is primarily a hormonal condition that impacts an estimated one in ten women and may put you at higher risk of severe COVID-19, according to research. PCOS can also make it more difficult to get pregnant, or, like endometriosis, increase complications during pregnancy.
I still have so many questions, such as if there is anything I could do now to mitigate the chronic nature of PCOS. Yet, doctors continually fob off these questions, shrouding me in a patronizing expectation of “having to wait until you start having children,” as if once I am interested in children, I will gain admission to an elite secret club of better care.
The UK campaigning group Long COVID Kids has documented the wider impact of Long COVID on reproductive health — such as changes to menstruation and triggering menopause. The same post also points to a study of the negative impact on ovarian function, along with other triggered conditions such as ovarian cysts.
A Patient-Led Research Collaborative review also found that women with Long Covid had increased rates of reproductive health issues — including, but not limited to, endometriosis, infertility, ovarian cysts, and other conditions. The review also mentioned another condition I am waiting to be tested for, after two years of misdiagnosis — POTS (postural orthostatic tachycardia syndrome). Why are these conditions not considered in tandem with each other, to save time and needless testing that causes nothing but distress?
We also know that COVID-19 tends to disrupt menstruation, as well as “fertility potential.” COVID-19 impacts male fertility, too, reducing sperm counts even after mild infections and causing erectile dysfunction. Some people with Long COVID are opting out of having children altogether, because of the strain of delivery and childbearing to the body, or because of the inability to raise or financially support a child.
Before catching COVID-19, I was bouncy, energetic, and socially confident. I had never had any notable health issues; now, my hair falls out in clumps, enough that my hairdresser has adapted to hide the thinning hairline. Excessive hair growth dominates my jawline and eyebrows. There’s also acne, dark spots of skin, and tense bloating warranting “she’s pregnant!” commentary from friends, family, and colleagues. There are few resources on how to cope with such an overwhelming diagnosis and aftermath.
I have been disabled from birth — but attempting to access reproductive healthcare with Long COVID has been a rough learning experience. Thanks to a litany of traumatic experiences when seeking relief from Long COVID, I am now obliged to take a chaperone with me to all medical appointments. Medical professionals speak to my chaperone as if they are the patient — “what can I do to help?”
We are told we have to trust medical professionals — but that trust is a privilege not afforded to disabled people in healthcare settings.
I, in turn, am the “sweetheart” spoken at with “the voice.” Disabled people everywhere know it — slow and childlike, patronizing and loud. I am not afforded dignity or privacy as a result. Other professionals have asked for free disability education instead of discussing my symptoms; it’s an inappropriate presumption, as well as beyond bitterly distressing.
My care was also marked by desexualization, or being reduced to the presumed state of a child. Doctors assumed, “she’s disabled — so she won’t be interested in any of that,” as Lucy Webster documented in her book, The View From Down Here.
Disabled women learn to suppress our anger to achieve any kind of diagnostic result, never “speaking to” the weighted horror. We have dreams, too — but they are tempered by societal commentary, both inside and outside a medical setting. I used to dream of an ordinary life, maybe a life of growing old with a partner, a house, a family in some way. Now, I realize it would be a privilege to not be questioned about these wants or to not be subject to constant commentary.
Women have long been advocating for better reproductive healthcare in the Western world; PCOS has long been misunderstood, with treatment often merely consisting of being told, “just lose weight.” A lack of curiosity has written off reproductive healthcare as only “a woman’s issue” for far too long.
More research on the emerging connection between reproductive health and Long COVID is needed, as is a deliberate culture shift in any caring profession. That can only start with education aimed at ending ingrained stigma. Health is a collective concept — and if we forget that, the pandemic has taught us nothing.
by Lydia Wilkins
“Come back to me when you start wanting children,” my gynecologist said. I had asked about the implications on fertility, thanks to my Poly-Cystic Ovarian Syndrome (PCOS) diagnosis — and was dismissed once again. It enveloped me with such despair.
For over two years I was shunted between varying medical offices, from primary care to an STI clinic. Among many disabling symptoms, I was experiencing hair loss and excessive hair growth along my jawline since my SARS-C0V-2 infection. After developing Long COVID in March 2022, doctors considered me a “medical curiosity” and tested me endlessly, leading to wrong diagnosis after wrong diagnosis. I was prescribed medication after medication, but nothing seemed to help.
Eventually, I added another diagnosis to my chart when I was diagnosed with PCOS by a gynecologist. The hormonal condition is lifelong, presenting with symptoms such as excessive hair, hair loss, fatigue, and irregular periods. The World Health Organization recognizes PCOS as a leading cause of infertility; you are also at risk of other conditions such as diabetes. The gynecologist additionally said there was a possibility that I have endometriosis, in which tissue from the uterus grows in places where it should not be. Endometriosis is recognized for extreme levels of life-impacting pain and is also associated with infertility.
The impact of Long COVID on sexual health is still not fully known, but there are serious signs of sexual and reproductive health being impacted. To be a disabled woman who has to advocate for herself, with the research, in the face of medical indifference is beyond exhausting. At every stage, I have correctly diagnosed myself, while specialists would play “catch-up.”
Why are medical experts and public health officials not sounding the alarm, to warn the public about the impact of Long COVID on fertility?
Like COVID-19 which leaves inflammation in its wake, PCOS is also thought to be an inflammation-related condition. PCOS is primarily a hormonal condition that impacts an estimated one in ten women and may put you at higher risk of severe COVID-19, according to research. PCOS can also make it more difficult to get pregnant, or, like endometriosis, increase complications during pregnancy.
I still have so many questions, such as if there is anything I could do now to mitigate the chronic nature of PCOS. Yet, doctors continually fob off these questions, shrouding me in a patronizing expectation of “having to wait until you start having children,” as if once I am interested in children, I will gain admission to an elite secret club of better care.
The UK campaigning group Long COVID Kids has documented the wider impact of Long COVID on reproductive health — such as changes to menstruation and triggering menopause. The same post also points to a study of the negative impact on ovarian function, along with other triggered conditions such as ovarian cysts.
A Patient-Led Research Collaborative review also found that women with Long Covid had increased rates of reproductive health issues — including, but not limited to, endometriosis, infertility, ovarian cysts, and other conditions. The review also mentioned another condition I am waiting to be tested for, after two years of misdiagnosis — POTS (postural orthostatic tachycardia syndrome). Why are these conditions not considered in tandem with each other, to save time and needless testing that causes nothing but distress?
We also know that COVID-19 tends to disrupt menstruation, as well as “fertility potential.” COVID-19 impacts male fertility, too, reducing sperm counts even after mild infections and causing erectile dysfunction. Some people with Long COVID are opting out of having children altogether, because of the strain of delivery and childbearing to the body, or because of the inability to raise or financially support a child.
Before catching COVID-19, I was bouncy, energetic, and socially confident. I had never had any notable health issues; now, my hair falls out in clumps, enough that my hairdresser has adapted to hide the thinning hairline. Excessive hair growth dominates my jawline and eyebrows. There’s also acne, dark spots of skin, and tense bloating warranting “she’s pregnant!” commentary from friends, family, and colleagues. There are few resources on how to cope with such an overwhelming diagnosis and aftermath.
I have been disabled from birth — but attempting to access reproductive healthcare with Long COVID has been a rough learning experience. Thanks to a litany of traumatic experiences when seeking relief from Long COVID, I am now obliged to take a chaperone with me to all medical appointments. Medical professionals speak to my chaperone as if they are the patient — “what can I do to help?”
We are told we have to trust medical professionals — but that trust is a privilege not afforded to disabled people in healthcare settings.
I, in turn, am the “sweetheart” spoken at with “the voice.” Disabled people everywhere know it — slow and childlike, patronizing and loud. I am not afforded dignity or privacy as a result. Other professionals have asked for free disability education instead of discussing my symptoms; it’s an inappropriate presumption, as well as beyond bitterly distressing.
My care was also marked by desexualization, or being reduced to the presumed state of a child. Doctors assumed, “she’s disabled — so she won’t be interested in any of that,” as Lucy Webster documented in her book, The View From Down Here.
Disabled women learn to suppress our anger to achieve any kind of diagnostic result, never “speaking to” the weighted horror. We have dreams, too — but they are tempered by societal commentary, both inside and outside a medical setting. I used to dream of an ordinary life, maybe a life of growing old with a partner, a house, a family in some way. Now, I realize it would be a privilege to not be questioned about these wants or to not be subject to constant commentary.
Women have long been advocating for better reproductive healthcare in the Western world; PCOS has long been misunderstood, with treatment often merely consisting of being told, “just lose weight.” A lack of curiosity has written off reproductive healthcare as only “a woman’s issue” for far too long.
More research on the emerging connection between reproductive health and Long COVID is needed, as is a deliberate culture shift in any caring profession. That can only start with education aimed at ending ingrained stigma. Health is a collective concept — and if we forget that, the pandemic has taught us nothing.