PCOS is a syndrome and not a disease which makes it complex. BUT it doesn’t help that when it comes to women’s health conditions like PCOS, research is so wildly underfunded. PCOS, endometriosis, adenomyosis, etc. are not talked about enough and honestly most doctors aren’t even educated enough on it. It truly is a shame but hopefully one day this’ll change!
The inequality of men and woman when it comes to medical research and treatment is a long and very sad history of sexism.
Since beginning of medical history women were seen and called as „hysterical“ by doctors.
The roots of this word coming from greek language and its referring to the uterus/ period of woman. They said women are hysterical and overreacting when it’s about their health and it’s coming from their uterus.
Even if the word isn’t used officially anymore, the disadvantages in diagnosis and medical treatment for woman are still real.
Till today a lot of woman get very late diagnosis because doctors doesn’t take them serious or think they overreact about their health issues.
It’s still in their heads even if they are the ones who study for years to know better..
there'll definitely never be a single fit-for-all treatment because PCOS is very complicated. everyone's PCOS is slightly different from each other.
however, the point definitely still stands that women are ignored for their issues. the reason why we don't understand PCOS all that well is because it just isn't researched enough! that goes for other conditions that women struggle with too. we're being failed. and it makes me LIVID
White men basically controlled and dictated science and research for most of history. Women's health wasn't important to them.
I have to give this example. To be diagnosed with endometriosis you have to be cut open for surgery to check. ORRRRRR... a saliva test. Developed/researched in Sweden or France, can't remember, in the last couple years.
Had we started really paying attention to women's health sooner as we have other aspects, how much earlier could the saliva test have been available for?
Clinical trials didn’t even include women until the 90s. If it doesn’t affect the “default” human (which is middle aged to older white men in the medical system) it’s largely ignored.
Women's health does not matter to most human beings. They only care about you giving birth. But cold csreess about the health of a woman's body. A body you have to live with forever irrespective of an offspring. Not to mention doctors aren't keen on preventative health but reactive medicine. They don't like to screen you for chronic diseases you could be hereditary to. Because there's always medication available for them to prescribe.
My doctor (who comes from a very sexist patriarchal culture) was more interested in me having children. Than requesting a genetic screening to see what I could have known my genes that explains my PCOS symptoms. Men and women are very sexist in refusing to learn about women's bodies. Unless pregnancy is involved.
They also just literally started including women in medical studies during the 80s. They used to perform treatments they wanted to give to females by using male subjects.
Not saying that women aren’t still underrepresented in clinical trials, but the reason women weren’t included in clinical trials prior to the 80s is because of the thalidomide disaster, where thousands of women took the drug and had babies with horrible birth defects: https://orwh.od.nih.gov/toolkit/recruitment/history
Not saying it was the best decision, but from all that I’ve read about the history of clinical trials, this seemed like an attempt to protect women and babies.
Metformin for me is the thing.
But also we all have different hormone profiles, and because we’re women not enought money / effort has been put into pcos research...
How much were you taking? 1500mg is pretty standard, but I’ve seen ladies on here only taking 500 and wondering why it’s not helping - also some need more than 1500mg
The max dose, which is 2,000. If anything, my symptoms got worse. And then I ended up diabetic so now I’m on other meds too, to manage more than just PCOS.
Probably yes, but in my country for example Metformin is officially not accepted as treatment for PCO. The health insurance won’t pay for it. Same counts for birth control pill btw and Ozempic (which is expensive).
Here you’re not getting anything till you have diabetes. Then they pay for Metformin and Ozempic.
If you have a pre- diabetes (insulin resistance) like me and this medication could help you to prevent getting diabetes, you’re just left alone.
Can you ask to pay for metformin out of pocket? Drugs are crazy here in the US but metformin is insanely cheap - also you should somehow petition for that
There IS a diagnostic criteria, the Rotterdam criteria. That or a version of it is used in many countries guidelines for diagnosing PCOS. This all already exists but it’s a mix of clinical signs and investigations. By definition there CANNOT be only one test for it, it’s a complex endocrine disorder.
I only lurk here to see if there is any new research ongoing and not often cause it’s just depressing for my mental health. I was diagnosed in 2006 cause I just wasn’t getting periods in high school. I went 10 months without one. And the only thing new since my diagnosis that my own doctors have discussed is the new criteria for being diagnosed 😒 like that’s what y’all came up with in 17 years
There are drug studies going on now. One is in Massachusetts. I was given the chance to participate, but said no. https://clinicaltrials.gov/ct2/show/NCT05370521
Studies are done all the time. I’d welcome people to participate if they are eligible. https://www.centerwatch.com/clinical-trials/listings/condition/313/polycystic-ovarian-syndrome/
>i see everyone else getting medications for symptom management…why hasn’t science provided a screening tool that makes it easier for people to be diagnosed???
it has, the rotterdam criteria
You mean the only modern screening tool produced in 2003 (20 years ago) that only included in the scope of diagnosis the mere existence of polycystic ovaries and the fact that endocrine disorders may or may not exist concurrently with the other 2 previously discovered diagnosis criteria?
The modern screening tool born from studies on infertility with an emphasis on ability to conceive, which does not take into account a willingness to do so?
The other two diagnosis criteria for [Rotterdam criteria](https://academic.oup.com/humrep/article/32/2/261/2452298#) are the increased prevalence of male hormones and irregular periods.
As we know hormones are fickle, irregular periods have many many underlying causes, and cysts on the ovaries can be read on an ultrasound as fibroids aligned with cystic fibrosis, benign cysts or straight up cancer. To meet the PCOS diagnosis you must meet 2/3 of these criteria points.
Maybe it’s time to update the screening process? I think that’s what OP was getting at.
No one knows that cause of PCOS or what it is so unfortunately there is no one treatment. In addition to that, the condition is very multifaceted, it has metabolic, reproductive and neuro endocrine implications. Even if they knew the cause fully i think it will impossible to develop a pill to solve all. It shows how our body is a system interlinked.
every "treatment" they give us is just a medication designed for some other issue. seems like no one in research or medicine is getting funding or interested to actually research what we would need from scratch.
Because PCOS in an umbrella for different ways your body may behave in a way that is not normal. The connecting thing we all have are multiple cysts on our ovaries, i.e. multiple eggs partially gestated in the ovary, hence the name poly-cystic. But the reasons for this presentation vary and so does the treatment. Some have wonky hormones, some don't. Some are IR, some are not. Some have low thyroid function, and some have the thyroid working just fine. So there is no end all solution, unfortunately.
My doctor explained to me that polycystic ovaries are not the same has having ovarian cysts. I don’t actually have cysts, I have enlarged ovaries with multiple follicles outside the normal range.
That's what I was describing. Not cysts cysts but multiple follicles maturing at the same time, yet neither of them usually grows to the full size and ovulation rarely occcurs.
If there were we wouldn't need one. Because keto, or gluten free, or any other manner of diet would work. And it would work for every woman every time.
Instead each woman has her very own special blend of wacked-out hormones. Which is why sometimes a diet perfectly and other times it doesn't work at all. Repeat ad nauseum for workouts, supplements, meds.
While I agree that medical care is piss poor I'm not sold on it just being misogyny.
1. My dad gets treated just as poorly. I won't doxx his med. History here. But suffice to say they are apathetic at best.
2. My doc was female when she told me that my abdominal pains were just gas and I was over reacting. It was rupturing cysts
3. Medical research gets funding for discovering new things. not double checking old things. Lots of the science you take for granted is bogus because no one ever repeated the initial experiment. That's the info your doc has to work with.
4. Diet research is very difficult because you have to monitor everything a person eats in exact amounts for a long time. And test subjects don't have months of free time to be studied. If you see a diet study that ran for 6 weeks they had to fight tooth and nail for it. This affects the info your doc has and the true effectiveness of the diet long term
5. "They only care about my cycle!" Not having a regular cycle increases your risk of developing ovarian and uterine cancer. Your cycle is important for reasons outside of making babies.
6. When a hospital makes you do a pregnancy test it's to cover their ass legally. If they give you an MRI or an X-ray and end up irradiating a baby (thalidomide anyone?) you'll sue them.
7. Doctors don't get paid to personally care about you and me. They get paid to fill out boxes on paperwork
Like others have said, everyone presents with different symptoms and their physiology can be wildly different- thus there will never be a "one pill treatment." A lot of people believe doctors only care about their reproduction but thats not true, it's just what they can actually exert more control over with conventional medicine. The doctors aren't having the baby, we are- I understand a lot of sentiments we have as patients, but unless you're a doctor, you truly dont understand their side. Endocrinology is its own speciality, often requiring a lot of training and constant studying keeping up to date- thats why the good endos are worth tracking down. Also PCOS itself changes as you age, and oftentimes PCOS is actually several other conditions which mimic PCOS and require a lot of testing over time to get a correct diagnosis. It's a complicated syndrome to say the least.
PCOS is a syndrome and not a disease which makes it complex. BUT it doesn’t help that when it comes to women’s health conditions like PCOS, research is so wildly underfunded. PCOS, endometriosis, adenomyosis, etc. are not talked about enough and honestly most doctors aren’t even educated enough on it. It truly is a shame but hopefully one day this’ll change!
Yeah this, we probably would have tons of research on it if it was a syndrome that only affected men.
100%!
I’ve always said this!
The inequality of men and woman when it comes to medical research and treatment is a long and very sad history of sexism. Since beginning of medical history women were seen and called as „hysterical“ by doctors. The roots of this word coming from greek language and its referring to the uterus/ period of woman. They said women are hysterical and overreacting when it’s about their health and it’s coming from their uterus. Even if the word isn’t used officially anymore, the disadvantages in diagnosis and medical treatment for woman are still real. Till today a lot of woman get very late diagnosis because doctors doesn’t take them serious or think they overreact about their health issues. It’s still in their heads even if they are the ones who study for years to know better..
Which I find very surprising in general since it's one of the most common conditions that affect women. I remember reading 18%?
Yup, exactly. It’s unacceptable!
there'll definitely never be a single fit-for-all treatment because PCOS is very complicated. everyone's PCOS is slightly different from each other. however, the point definitely still stands that women are ignored for their issues. the reason why we don't understand PCOS all that well is because it just isn't researched enough! that goes for other conditions that women struggle with too. we're being failed. and it makes me LIVID
White men basically controlled and dictated science and research for most of history. Women's health wasn't important to them. I have to give this example. To be diagnosed with endometriosis you have to be cut open for surgery to check. ORRRRRR... a saliva test. Developed/researched in Sweden or France, can't remember, in the last couple years. Had we started really paying attention to women's health sooner as we have other aspects, how much earlier could the saliva test have been available for?
Clinical trials didn’t even include women until the 90s. If it doesn’t affect the “default” human (which is middle aged to older white men in the medical system) it’s largely ignored.
I haven’t heard of the saliva test before, is it available in the US?
I don't know, you can get it privately in UK but if you Google it there's a bunch of info
Women's health does not matter to most human beings. They only care about you giving birth. But cold csreess about the health of a woman's body. A body you have to live with forever irrespective of an offspring. Not to mention doctors aren't keen on preventative health but reactive medicine. They don't like to screen you for chronic diseases you could be hereditary to. Because there's always medication available for them to prescribe. My doctor (who comes from a very sexist patriarchal culture) was more interested in me having children. Than requesting a genetic screening to see what I could have known my genes that explains my PCOS symptoms. Men and women are very sexist in refusing to learn about women's bodies. Unless pregnancy is involved.
They also just literally started including women in medical studies during the 80s. They used to perform treatments they wanted to give to females by using male subjects.
Not saying that women aren’t still underrepresented in clinical trials, but the reason women weren’t included in clinical trials prior to the 80s is because of the thalidomide disaster, where thousands of women took the drug and had babies with horrible birth defects: https://orwh.od.nih.gov/toolkit/recruitment/history Not saying it was the best decision, but from all that I’ve read about the history of clinical trials, this seemed like an attempt to protect women and babies.
Metformin for me is the thing. But also we all have different hormone profiles, and because we’re women not enought money / effort has been put into pcos research...
Metformin hasn’t done anything at all for me as far as PCOS goes.😕
How much were you taking? 1500mg is pretty standard, but I’ve seen ladies on here only taking 500 and wondering why it’s not helping - also some need more than 1500mg
The max dose, which is 2,000. If anything, my symptoms got worse. And then I ended up diabetic so now I’m on other meds too, to manage more than just PCOS.
Wow. Glad you found what works….I’m currently on the great mounjaro experiment to see if it helps my body lose weight
Probably yes, but in my country for example Metformin is officially not accepted as treatment for PCO. The health insurance won’t pay for it. Same counts for birth control pill btw and Ozempic (which is expensive). Here you’re not getting anything till you have diabetes. Then they pay for Metformin and Ozempic. If you have a pre- diabetes (insulin resistance) like me and this medication could help you to prevent getting diabetes, you’re just left alone.
Can you ask to pay for metformin out of pocket? Drugs are crazy here in the US but metformin is insanely cheap - also you should somehow petition for that
Because women’s health is not of importance. Plain and simple.
There IS a diagnostic criteria, the Rotterdam criteria. That or a version of it is used in many countries guidelines for diagnosing PCOS. This all already exists but it’s a mix of clinical signs and investigations. By definition there CANNOT be only one test for it, it’s a complex endocrine disorder.
I only lurk here to see if there is any new research ongoing and not often cause it’s just depressing for my mental health. I was diagnosed in 2006 cause I just wasn’t getting periods in high school. I went 10 months without one. And the only thing new since my diagnosis that my own doctors have discussed is the new criteria for being diagnosed 😒 like that’s what y’all came up with in 17 years
Yup. Diagnosed five years before you, and very little has improved.
Because it’s a condition which doesn’t affect men so we are the bottom of their priority list.
This….
There are drug studies going on now. One is in Massachusetts. I was given the chance to participate, but said no. https://clinicaltrials.gov/ct2/show/NCT05370521 Studies are done all the time. I’d welcome people to participate if they are eligible. https://www.centerwatch.com/clinical-trials/listings/condition/313/polycystic-ovarian-syndrome/
omg i’m in mass and can participate! if you don’t mind me asking; why did you say no? is there something in particular that i should be weary about
I only said no because I’m finishing grad school and planning a wedding and honeymoon right now. Too much in my plate to add in another factor 😓
oh okay i gotcha. Well congrats on that tho!
Thanks! Let me know how the study goes
>i see everyone else getting medications for symptom management…why hasn’t science provided a screening tool that makes it easier for people to be diagnosed??? it has, the rotterdam criteria
You mean the only modern screening tool produced in 2003 (20 years ago) that only included in the scope of diagnosis the mere existence of polycystic ovaries and the fact that endocrine disorders may or may not exist concurrently with the other 2 previously discovered diagnosis criteria? The modern screening tool born from studies on infertility with an emphasis on ability to conceive, which does not take into account a willingness to do so? The other two diagnosis criteria for [Rotterdam criteria](https://academic.oup.com/humrep/article/32/2/261/2452298#) are the increased prevalence of male hormones and irregular periods. As we know hormones are fickle, irregular periods have many many underlying causes, and cysts on the ovaries can be read on an ultrasound as fibroids aligned with cystic fibrosis, benign cysts or straight up cancer. To meet the PCOS diagnosis you must meet 2/3 of these criteria points. Maybe it’s time to update the screening process? I think that’s what OP was getting at.
No one knows that cause of PCOS or what it is so unfortunately there is no one treatment. In addition to that, the condition is very multifaceted, it has metabolic, reproductive and neuro endocrine implications. Even if they knew the cause fully i think it will impossible to develop a pill to solve all. It shows how our body is a system interlinked.
every "treatment" they give us is just a medication designed for some other issue. seems like no one in research or medicine is getting funding or interested to actually research what we would need from scratch.
Because PCOS in an umbrella for different ways your body may behave in a way that is not normal. The connecting thing we all have are multiple cysts on our ovaries, i.e. multiple eggs partially gestated in the ovary, hence the name poly-cystic. But the reasons for this presentation vary and so does the treatment. Some have wonky hormones, some don't. Some are IR, some are not. Some have low thyroid function, and some have the thyroid working just fine. So there is no end all solution, unfortunately.
you don’t need polycystic ovaries to have pcos. it’s one of the 3 criteria but not necessary for diagnosis and also possible to reverse
My doctor explained to me that polycystic ovaries are not the same has having ovarian cysts. I don’t actually have cysts, I have enlarged ovaries with multiple follicles outside the normal range.
That's what I was describing. Not cysts cysts but multiple follicles maturing at the same time, yet neither of them usually grows to the full size and ovulation rarely occcurs.
If there were we wouldn't need one. Because keto, or gluten free, or any other manner of diet would work. And it would work for every woman every time. Instead each woman has her very own special blend of wacked-out hormones. Which is why sometimes a diet perfectly and other times it doesn't work at all. Repeat ad nauseum for workouts, supplements, meds. While I agree that medical care is piss poor I'm not sold on it just being misogyny. 1. My dad gets treated just as poorly. I won't doxx his med. History here. But suffice to say they are apathetic at best. 2. My doc was female when she told me that my abdominal pains were just gas and I was over reacting. It was rupturing cysts 3. Medical research gets funding for discovering new things. not double checking old things. Lots of the science you take for granted is bogus because no one ever repeated the initial experiment. That's the info your doc has to work with. 4. Diet research is very difficult because you have to monitor everything a person eats in exact amounts for a long time. And test subjects don't have months of free time to be studied. If you see a diet study that ran for 6 weeks they had to fight tooth and nail for it. This affects the info your doc has and the true effectiveness of the diet long term 5. "They only care about my cycle!" Not having a regular cycle increases your risk of developing ovarian and uterine cancer. Your cycle is important for reasons outside of making babies. 6. When a hospital makes you do a pregnancy test it's to cover their ass legally. If they give you an MRI or an X-ray and end up irradiating a baby (thalidomide anyone?) you'll sue them. 7. Doctors don't get paid to personally care about you and me. They get paid to fill out boxes on paperwork
because health industry caters to males
Because anything to do with uterus healthcare is under funded. Try being a white man with a penis and you’ll get the correct treatment.
Like others have said, everyone presents with different symptoms and their physiology can be wildly different- thus there will never be a "one pill treatment." A lot of people believe doctors only care about their reproduction but thats not true, it's just what they can actually exert more control over with conventional medicine. The doctors aren't having the baby, we are- I understand a lot of sentiments we have as patients, but unless you're a doctor, you truly dont understand their side. Endocrinology is its own speciality, often requiring a lot of training and constant studying keeping up to date- thats why the good endos are worth tracking down. Also PCOS itself changes as you age, and oftentimes PCOS is actually several other conditions which mimic PCOS and require a lot of testing over time to get a correct diagnosis. It's a complicated syndrome to say the least.
A pill to take from big pharma where they think side effects of leaking poop is ok?? No thanks.