ME/CFS and Long Covid and menstrual cycles

[rvallee]

This post has been copied and following discussion moved from the Long covid in the media thread.

In another disappointing reminder of how little interest there is for women's health in medicine, this has been obvious early on, very commonly reported in LC forums, yet barely recorded or studied at all. You'd almost think this is a taboo subject.


Long Covid and menopause - the important role of hormones in Long Covid must be considered
https://www.maturitas.org/article/S0378-5122(21)00174-2/fulltext

A total of 460 women responded. 48% of women had been experiencing symptoms for more than 6 months. 50% of women reported that their periods had stopped or changed since their infection and 80% stated that their periods had not returned to how they were before their Covid infection.

Interestingly, 62% of responders reported that their symptoms of Long Covid were worse on the days before their periods which is when hormone levels are usually at their lowest. The vast majority of women, 70%, had thought that some of their Long Covid symptoms could be a result of either their perimenopause or menopause. However, 84% of women had never been asked by a healthcare professional about whether or not they could be perimenopausal or menopausal. They were given no advise about treatment of their perimenopause or menopause.​

Of course the same is true with ME, I see the same reports. The NIH housed ME in the women's health institute for many years and didn't even bother researching this. So many wasted opportunities.

 

[Wyva]

In another disappointing reminder of how little interest there is for women's health in medicine, this has been obvious early on, very commonly reported in LC forums, yet barely recorded or studied at all. You'd almost think this is a taboo subject.


Long Covid and menopause - the important role of hormones in Long Covid must be considered
https://www.maturitas.org/article/S0378-5122(21)00174-2/fulltext

A total of 460 women responded. 48% of women had been experiencing symptoms for more than 6 months. 50% of women reported that their periods had stopped or changed since their infection and 80% stated that their periods had not returned to how they were before their Covid infection.

Interestingly, 62% of responders reported that their symptoms of Long Covid were worse on the days before their periods which is when hormone levels are usually at their lowest. The vast majority of women, 70%, had thought that some of their Long Covid symptoms could be a result of either their perimenopause or menopause. However, 84% of women had never been asked by a healthcare professional about whether or not they could be perimenopausal or menopausal. They were given no advise about treatment of their perimenopause or menopause.​

Of course the same is true with ME, I see the same reports. The NIH housed ME in the women's health institute for many years and didn't even bother researching this. So many wasted opportunities.

I very much agree with this, I've had the same period-related experience (although for me it returned to almost normal when I got better after the first two really difficult years). The point is that I regarded this as one of the less dismissible symptoms, since this is really not something subjective. My period didn't just subjectively last for a whopping 1.5 days for two whole years.

So I mentioned that to every doctor to make them understand that this is serious. If something messes up your period long-term, then it's not a joke, then something really must have happened. And no one cared about this aspect. I was even angrily told by an internalist that this is really not her problem to deal with, this is what gynecologists do and I should leave her alone with this. She looked seriously annoyed. This was the most I could get out of them with this strategy of mine.

 

[Midnattsol]

I very much agree with this, I've had the same period-related experience (although for me it returned to almost normal when I got better after the first two really difficult years). The point is that I regarded this as one of the less dismissible symptoms, since this is really not something subjective. My period didn't just subjectively last for a whopping 1.5 days for two whole years.

So I mentioned that to every doctor to make them understand that this is serious. If something messes up your period long-term, then it's not a joke, then something really must have happened. And no one cared about this aspect. I was even angrily told by an internalist that this is really not her problem to deal with, this is what gynecologists do and I should leave her alone with this. She looked seriously annoyed. This was the most I could get out of them with this strategy of mine.

I lost my period for nearly two years, complete lack of interest from doctors. Or, my hormones were tested, I was told to eat more, exercise less and to not be a type A person.

 

[Amw66]

In another disappointing reminder of how little interest there is for women's health in medicine, this has been obvious early on, very commonly reported in LC forums, yet barely recorded or studied at all. You'd almost think this is a taboo subject.


Long Covid and menopause - the important role of hormones in Long Covid must be considered
https://www.maturitas.org/article/S0378-5122(21)00174-2/fulltext

A total of 460 women responded. 48% of women had been experiencing symptoms for more than 6 months. 50% of women reported that their periods had stopped or changed since their infection and 80% stated that their periods had not returned to how they were before their Covid infection.

Interestingly, 62% of responders reported that their symptoms of Long Covid were worse on the days before their periods which is when hormone levels are usually at their lowest. The vast majority of women, 70%, had thought that some of their Long Covid symptoms could be a result of either their perimenopause or menopause. However, 84% of women had never been asked by a healthcare professional about whether or not they could be perimenopausal or menopausal. They were given no advise about treatment of their perimenopause or menopause.​

Of course the same is true with ME, I see the same reports. The NIH housed ME in the women's health institute for many years and didn't even bother researching this. So many wasted opportunities.

Interestingly vaccination has had similar effects for some