What it’s really like Living with PCOS – A Collection of Stories from Real Women

September is PCOS Awareness month. PCOS is short for Polycystic Ovary Syndrome, which is (more than) a menstrual condition in which the ovaries produce an abnormal amount of androgens or male sex hormones ,that are usually present in women in small amounts.

Read about PCOS Awareness Month here

When I started my IVF journey, was the first time I became aware of other menstrual conditions that affect fertility, like endometriosis, adenomyosis, PCOS, fibroids, menorrhea (absent of period), menorrhagia (heavy bleeeding) etc.

That is my truth. It’s partially my fault. Yes, the adults in my life never talked about menstruation, and so I didn’t bother learning about my menstrual health because it was something we don’t talk about. It’s still a taboo and shameful topic in today’s society.

And then I had a near scare when I was 21, was diagnosed with CIN3, (myt first pap smear showed abnormal bleeding), had a cone biopsy of of my cervix , and thankfully it was benign. And then a few years later, I found out thata ex-colleague, one year younger died from cervical cancer.

And so since then I made a point to see my gynae whenever I noticed something strange in the neighbourhood down under. But there was no one I could talk to.

I wished there were more education and awareness around menstrual and fertility health, growing up.

The knowledge would have made me less scared and maybe more empathetic towards my fellow female tribe. It would have made me want to embrace my period as a time of rest, It would made me want to take care parts of myself that cannot be seen, and needs to be taken care of.

In reality, we only start looking and worrying when things go wrong, right? We live life, not knowing, completely checked out, and pretend there’s no suffering in life. You know, like I used to tell myself – if it doesn’t impact my day to day life, it doesn’t cause me to lose money – why worry?

And that’s okay.

But knowledge is power. And every women, even men, should be armed with knowledge of what’s happening in their body, and not be ashamed of it.

That’s why we are here. That’s why I’m writing this post, which is aligned with the one of the missions of my blog – to bring awareness to feminine issues especially menstrual conditions that affect women’s reproductive health.

For research purposes, I started reading real-life stories of women living with PCOS, and I thought why not collate a list – so others can have a chance to learn from other “Cysters” and advocate for themselves if they suspect they have PCOS. I’ll let them tell you what’s it all about.

It’s time.

In today’s blog, you will get to know:

• PCOS (what is it, the diagnosis, symptoms)

• List of stories (Read a story, Watch A Video, PCOS Pregnancy Success stories)

• PCOS Resources in Singapore

• Yoga and PCOS

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“PCOS is much more than a period problem. It’s a whole body hormonal condition that can last a lifetime”

Polycystic Ovary Syndrome

What is it?

PCOS is a metabolic, endocrine and reproductive disorder that affects a woman’s hormone levels.

1 in 10 women are affected by PCOS during their childbearing years.

Polycystic’ literally translates as ‘many cysts”

The name polycystic ovary syndrome describes the numerous small cysts (fluid-filled sacs) that form in the ovaries.

These cysts are formed when a woman doesn’t make enough of the hormones needed to ovulate, ie when a mature egg is not released from an ovary ( which usually happens on day 12-14 of a 28 day menstrual cycle. If the egg is not fertilized by a male sperm, it is sent out of the body during your period). These cysts causes the ovary to produce an abnormal amount of androgens, male sex hormones that are usually present in women in small amounts. This causes more problems with the menstrual cycle and thus it causes symptoms like anovulation (no menses / no ovulation) and male related.

Note: Some women may have PCOS and have no symptoms and healthy woman may have polycystic ovaries. Lara Briden, author of Period Repair Manual says that “Polycystic ovaries can occur with PCOS but they are not specific to PCOS…one study showed that healthy women have polycystic ovaries 25% of the time.”

DIAGNOSIS

To be diagnosed with PCOS a woman has to show two out of three of the main defining features of the condition. These are:

1. Irregular periods; often meaning you are menstruating fewer than four times a year

2. Excess androgen; high levels of hormones which can physically manifest as symptoms such as excess facial or body hair (hirsutism)

3. Polycystic ovaries; enlarged ovaries with multiple follicles making it difficult to release eggs for ovulation

Main symptoms

• irregular periods (late periods/ too many days of bleeding)

• hirsutism (excessive body & facial hair)

• acne

• hair loss

• blood sugar imbalances (caused by production of excess insulin)

• weight gain

• obesity

• reduced fertility

• Emotional symptoms — depression, anxiety and poor self- esteem

• Increased risk of diabetes and heart-disease

Living with PCOS: Real-Life Stories

Read a Story

1. Sasha  https://resolve.org/my-life-with-pcos-a-personal-story/

2. Ashley  https://www.totm.com/living-pcos-story/

3. Bella (Singapore) https://www.theaffirmativepeople.com/post/journey-with-dean-ng-bella-pcos

4. Karagan https://thesmooco.com/blogs/blog/my-pcos-success-story

5. Elizabeth https://cherokeewomenshealth.com/2021/04/my-life-with-pcos-a-patients-story/

6. Naomi https://myloworld.com/blogs/real-life/living-with-pcos

7. Nicole https://magazine.medlineplus.gov/article/pushing-through-life-with-pcos

8. Georgia https://www.natracare.com/blog/what-pcos-looks-like-a-true-story

9. Bailey https://treatment.shesyncs.com/my-pcos-reversal-story-q

10. Malaysia https://www.prestigeonline.com/my/lifestyle/wellness/women-share-their-stories-poly-cystic-ovarian-syndrome-pcos/

11. Celebrity Stories with PCOS https://www.womenshealthmag.com/uk/health/a38171906/celebrities-with-pcos/

12. 8 Celebrities with PCOS

13. Collection of Stories  https://helloclue.com/articles/cycle-a-z/getting-diagnosed-with-pcos-personal-experiences-and-advice

14. Collection of Stories https://weconceive.com/library/fertility-diagnoses/living-with-pcos-real-stories-from-women-finding-hope-in-the-diagnosis

15. Collection of Stories https://www.abc.net.au/news/2018-04-28/polycystic-ovary-syndrome-women-on-life-with-pcos/9607494

16. Collection of Stories https://www.sheknows.com/health-and-wellness/articles/1122917/living-with-pcos/

Watch a Video

1. Kate (Video) –  https://www.youtube.com/watch?v=EASxlRrbvbM

2. Anja (Video) – https://www.facebook.com/peppysupport/videos/429542562257352/

3. Torri (Video) https://www.brut.media/us/health/living-with-pcos-ce1d3624-b58e-4c5b-bc0b-c15a5707b9ef

4. Preetipls (Singapore) https://www.facebook.com/watch/?v=637867373546360

PCOS Pregnancy Success stories

Velda Tan (Singapore) https://www.smartparents.sg/pregnancy/when-you-are-pregnant/celeb-mum-be-velda-tan-ill-tell-my-daughter-not-quit-school-unlike

Villata https://gulfnews.com/parenting/pregnancy-baby/i-was-diagnosed-with-pcos-at-13-at-27-i-am-pregnant-with-my-second-child-says-gulf-news-reader-1.1653413994217

Julie https://www.pollie.co/blog/pcos-pregnancy

Courtney https://www.acog.org/womens-health/experts-and-stories/the-latest/getting-pregnant-despite-pcos

Victoria https://www.yourfertility.org.au/victorias-pcos-stor

Sarah https://my.clevelandclinic.org/patient-stories/381-unique-weight-management-program-helps-patients-pregnancy-dream-come-true

Alice https://www.yourfertility.org.au/alices-pcos-story

Tania https://theribbonbox.com/fertility/natural-conception-pcos

Abigail https://www.laurenallennutrition.com/post/getting-pregnant-naturally-with-pcos-after-3-years-of-trying-with-treatments-abigail-s-story

Jamie, Kayla, Kendall, Jessica, Krystal, Farnaz, Jaymes https://smartfertilitychoices.com/pcos-pregnancy-success-stories/

PCOS Resources in Singapore

Unfortunately , I didn’t find a lot of resources or support in Singapore context. What I found close to home that is helpful is this group in Malaysia called My PCOS I Love You, and I’ve put the link below.

• FB Group – Online Support Group (PCOS SG) (though it doesn’t seem active at the moment.)

• A thesis written by Quek Liu Ting in 2018 entitled “Exploring the Experiences of Women Living With Polycystic Ovary Syndrome (WLW-PCOS) In Singapore’s Context” by, which is a good read.

• Recently in 2022, there was a play about PCOS titled “Lotus Root Support Group” starring local actresses Shannen Tan and Miriam Cheong, both of whom suffer from PCOS. They say they have a video-on-demand recording of the play will also be released in the second half of March. (PS I’ve reached out to see if it’s available to view if anyone’s interested?)

• PCOS I Love You

• And from the FSS fold, these IVF warriors Velda Tan, Kristen Kiong, and Josephine Foong, who has spoken on occasion, about their PCOS diagnosis. (And our lovely Kristen is doing IG Live Talk on the 28th Sept. I will update with the link once it’s available.)

Can Yoga help with PCOS?

So far conventional medicine can only treat the symptoms not the cause.

What has worked for these brave PCOS warriors or Cysters are a multi-prong approach of a healthy lifestyle, weight loss if overweight, and targeted therapy such as hormones and medication.

From a holistic perspective, addressing the stress levels would be a step towards treating emotional symptoms like “negative feelings about being female and feeling subordinate or inferior” and elevated hormone levels nsulin levels which can be exarcebated by stress etc.

So yoga can help – research has shown that yoga can be helpful for PCOS; several studies show that it’s more beneficial than other forms of exercise, in reducing the physical and emotional symptoms.

I will go into more detail of Yoga for PCOS in future posts, but for right now, just to keep this post shorter (it’s already too long :)), if you are interested in using yoga as a tool to treat your PCOS symptoms, just start doing yoga, j start going for classes, attend meditation sessions or youtube has alot of ideas too.

I hope this was helpful for you as it was helpful for me, learning about PCOS from the “Cysters.” I will update this post if I find more stories, and if you have a link to share, please connect with me at hello@sophiexdsanders.com

Related Posts:

How Yoga Can Help With Endometriosis

Your Guide to Common IVF Abbreviations

References:

Moving with The Moon By Ana Davis

John Hopkins Medicine

Rotterdam Criteria For PCOS Diagnosis