As part of our campaign to increase awareness around Polycystic Ovarian Syndrome the team at FertilityAnswers attended the PCOS Symposium held by The PCOS Challenge.
It must be noted, I am a PCOS advocate who has not been diagnosed with PCOS. I am also not a scientist (we will have a more 'sciency' reflection from one of our geneticists who attended in the coming weeks). Therefore much of what I wanted to understand - beyond infertility, which is a serious issue in itself - is what it means to live with PCOS.
My hope is that this post can be a place to send loved ones if they have questions or do not fully grasp why PCOS is such a “big deal” for those diagnosed.
MORE is needed
More awareness, more research, more funding, more understanding and definitely more education. Working for FertilityAnswers has been a truly educational experience. I have learned a lot about PCOS since joining the team earlier this year - but as a female who had cystic acne as a teen and has been treated for an ovarian cyst, it started to seem odd that nobody had brought this up as a possibility. But after learning more about the lack of funding and education, it makes much more sense. PCOS is considered an issue that only impacts women of reproductive age 🙄, doctors who are not confronted with issues of infertility don’t know much about the syndrome and do not think to ask about other symptoms that could be related.
In reality, PCOS is a lifelong condition. Doctors cited cases - though rare - in which premature hair growth, likely connected to PCOS, started in females as young as four. Additionally, the idea that a women can’t have PCOS because they no longer have their periods is just untrue. The hormonal changes that lead up to menopause do not erase any of the effects PCOS may have had and will continue to have on a patient's life.
This lack of understanding leads to confusion for girls entering puberty and women entering perimenopause along with the doctors who treat them.
This is not a condemnation of doctors who miss the diagnosis, rather a plea for increased visibility of the signs of PCOS and value of catching it early. However, as pediatric PCOS specialist, Dr. Melanie Cree-Green noted, “for those who are diagnosed - no matter their age - the treatment options for women with PCOS have not changed much over the last two decades.” For something that impacts at least 10% of women, that’s startling.
There is growing hope
The work being done by the PCOS challenge is truly remarkable in that they are getting Congress and scientists to treat PCOS with the respect and urgency it deserves. The research into PCOS has increased and there have been shifts in the way PCOS is diagnosed, including different parameters for females going through puberty as their hormone levels are much different from those of reproductive age.
PCOS can lead to diabetes, heart disease, fertility issues, weight gain, depression and more. While there is work to be done to innovate the way doctors treat PCOS, early diagnosis and intervention is key to prevention of related conditions as well as overall quality of life. It’s much easier to stop a spark from spreading than it is to put out a blaze.
Seeing the diversity of the symposium’s attendees and speakers - ethnicity and gender - also gave me hope for the work that can be done. The more we talk about PCOS as a health issue rather than a women’s health issue, the better.
This is far from an exhaustive explanation of the physical, emotional and mental stress PCOS can put on a person. But I do hope it has given you a slightly better understanding of what leads to some of the frustration felt by those you care about who deal with this issue every day.
If you would like to learn more about anything mentioned in this post, please let us know in the comments!