Polycystic Ovary Syndrome (PCOS) Affects 1 in 10 Women Around the Globe. What Are Patients Doing About It?

September is #pcosawarenessmonth and its amazing to see the dedication of the PCOS patients and advocates involved in spreading awareness. PCOS Challenge – world’s leading organisation supporting PCOS advocacy has been working hard to leave no stone unturned in prioritising PCOS to help increase PCOS research and funding. They have done an incredible job coloring the world’s – buildings of importance – teal to indicate the seriousness of this condition affecting 1 in 10 women. 

PCOS Tracker by TrialX Appbakery is proud to sponsor the PCOS Challenege 5k run/walk virtual event for New York city.

In last few years, we had a great time talking to some fabulous PCOS advocates from PCOS Challenge – Sasha Otty, the founder director of PCOS Challenge, Ashley Levinson, (aka the PCOSgurl), Michelle Schwarz and Lisa Rosenthal – and having them on CureTalks to guide the discussions on PCOS.

Discussions for Solutions on PCOS

We had some very informative discussions/ pcos community sessions with Dr Aimee of @egg_whisperer, Dr Carolyn Alexander of @SCRCIVF, Dr Anuja Dokras of University of Pennsylvania, Dr Anastassia Amaro and Dr. Kelly Costello Allison from the Center for Weight and Eating Disorder of University of Pennsylvania on PCOS and its relation to metabolic risk factors such as irregular menstrual cycles, obesity, diabetes, erratic hair growth including effective management of these symptoms.

In these talks we covered important questions asked by PCOS advocates, PCOS patients and women using the PCOS Tracker – questions that affect everyday lives of women with PCOS. Answering a question about how to know your irregular periods are due to PCOS or perimenopause, when in your 40’s, Dr Aimee suggested that women with PCOS should get their blood pressure checked, look at their lipid levels, their cardiovascular health, and can get an AMH test (Anti-Mullerian Hormone) done. AMH is recommended for women over the age of 45 having PCOS, who are really looking to optimize their health. She says

this is something that a woman who is curious about where she’s at with perimenopause can do over time.

Dr Aimee recommends to

Keep everything in a binder, keep your labs, track them over time, that way you can be your own best advocate if you have PCOS, especially around perimenopause. 

Women tracking their PCOS symptoms using PCOS Tracker selectedirregular periods” as the most common PCOS symptom. 

Dr Alexander believes

All that information from those women is so important and vital. And I think it’s fantastic that you guys are collecting that.

She says that in PCOS proper ovulation doesn’t necessarily occur at a synchronously timed point.

The reason periods get further apart is because ovulation occurs later in the cycle from when the cycle started.

She believes a lot of this has to do with proper diet and exercise along with dysregulated HbA1c levels and insulin resistance.

Why does PCOS happen? 

Dr Alexander explains two schools of thought: 

  1. Frequent LH pulsatility/chronic LH elevation/absence of peak LH surge at mid cycle which normally allows the egg to pop.
  2. Chronic insulin elevation – leading to ovarian theca-cell hyperplasia – leading to overproduction testosterone – that hinders proper follicles development. 

PCOS, Fertility & IVF Cycles

Talking about fertility and PCOS Dr Anuja Dokras of University of Pennsylvania assures

this condition is not going to result in them not being able to get pregnant.

She says 

In fact, when we look at these ovaries, there are a lot of eggs in there. So from a fertility specialist point of view, I am very pleased when I see these ultrasounds because my patients have excellent ovarian reserve or a high number of eggs and all I have to do is help them release these eggs.

For women who may have to go through IVF, Dr Alexander says

With PCOS, there’s evidence that an embryo that’s placed fresh, there may be more high blood pressure and preeclampsia issues with pregnancy and preterm labor, than if you freeze the embryos and place them at the subsequent period or a month or two later when that lining got a chance to shed.

LISTEN to this talk and more such discussions about PCOS on CureTalks here.

Of course many questions remain unanswered but our scientific fraternity is still striving hard to find them for us. And for the same reason we will be continuing these discussions on new developments related to all things women and all things PCOS in the coming months on CureTalks.

In an upcoming talk, we will be discussing Hypothyroidism and Hashimoto’s disease in relation to PCOS and Infertility on 29th October at 4 pm est.

Stay tuned and have your questions ready!

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