Living with PCOS- Women share their experiences

Sep 13, 2021 News

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Kaieteur News – For many women, being diagnosed with Polycystic Ovarian Syndrome (PCOS) means their chances of becoming a mother is reduced by at least 50 percent. However, PCOS does not only affect the fertility rate of those living with the condition, it affects their physical and mental well-being as well.
Some women who have PCOS complain of not just the physical manifestations of having the condition such as severe acne, irregular periods, sometimes excessive bleeding at that time of the month, increased pain in the lower abdominal region, exhaustion, hair loss or having facial hair. They also complain of experiencing heavy mood swings, depression, anxiety, and diminished sexual satisfaction.
Given that September is dedicated to raising awareness about the disorder found in one in ten women globally, Kaieteur News caught up with a few women who shared their experience of living with PCOS.
According to Iris Da silva, while the PCOS is not a life threatening medical condition, when she was told that there are cysts on her ovaries that can prevent or lessen her chances of being a mother in the future, she felt as though her life was ending.
Da Silva recalled that it was a normal day that she was downtown in the city shopping when she started to experience severe pain in her lower back and abdomen. The young woman first visited the pharmacy and then the doctor.
During the doctor’s visit an ultrasound revealed that one of ovaries was larger than the other.
“When I first found out I cried hopelessly… I was depressed and I lost faith in life itself because how am I a woman and I couldn’t do one of the main things that only women can do?” she said recalling the moment she was diagnosed.
Da Silva noted nevertheless, that the support and reassurance of her family members, boyfriend and friends were important in helping her feel confident again.
The young woman now has regular checkups with her gynecologist and medical professionals. She follows their recommendations to help her better manage her PCOS symptoms and increase her chances of overcoming complications that accompanies the disorder.
She told Kaieteur News that social media also played a major role in her emotional support.
“I did research and saw there are so many women with the same thing and it’s like okay… I read a lot about the symptoms and saw hair loss, facial hair, weight gain, weight loss, major aches and I realized that I had these symptoms for years and I never noticed something is wrong with my body…,” she explained.
In the interim, Da silva noted that since her diagnosis, she has become emboldened to speak on behalf of women affected by PCOS.
“Being diagnosed with PCOS made me realize that I shouldn’t care how society sees me and other woman who have the same problem…Fertile or Infertile, pregnancy is a personal choice and should be respected by all. I don’t think they should care about society and the stigma they’ve pinned towards ‘infertile women’ but it’s their body, their choice,” she said.
In that same vein, Kimberley Manbodh a medical student with PCOS is using her experience and diagnosis to help spread awareness about the condition and its effects.
Manbodh is actually the Founder of the Cysterhood Support Group-Guyana—a Non Governmental Organisation (NGO) that advocates for women with PCOS. She said that the organization was brought on stream two years after she found out she had the disorder. Manbodh was diagnosed with PCOS after a symptomatic flare in 2018.
“I was experiencing prolonged bleeding, excessive acne and mood swings. Upon receiving a thorough doctor’s visit with sufficient history taking and physical examination couple with complimentary testing (ultra sound and hormonal level tests) it was concluded that I have PCOS,” she said.
According to Manbodh having PCOS has a major impact on her life. She noted that “Some days I’m physically and mentally exhausted, regardless of how much rest I get or whether I’m highly functional doing the things I love the most. Mood swings are a big concept.”
The PCOS advocate says that though she does not have a lot of the physical signs of PCOS, the one physical sign (hirsutism) facial hair growth which she tries her best to manage can be quite annoying, whenever she has to explain to persons the reason behind it.
Manbodh says that she nevertheless empathizes with other women who have other symptoms, such as uncontrollable weight loss.
“Symptoms like the weight gain has been the concern of so many and judgment for those who may not ask or fully understand why,” she said adding that that is reason that she started the Cysterhood- Support group.
“Support is extremely important dealing with PCOS it’s one of the best care you can receive in additional to follow up by your physician to manage your symptom,” she said adding,” When there is a support system, you feel more accepted and you eventually grow strength not only for yourself but to help others living with PCOS and that is something I was able to do after I decided to open up about my PCOS. I get extreme pleasure when I’m able to help others. It’s still a learning process and everyone should be treated individually with this disorder.”
And since PCOS is not curable and mentally disturbing, Manbodh says when dealing with persons who are uninformed or educated about PCOS, it can also add to the stresses of living with the condition.
She still deals with regular symptoms such as prolonged bleeding or the absence of period from time to time. She noted that while it can affect her ability to work or function in a regular capacity, through support she has been learning ways to adequately manage her PCOS.
But for Crystal Stanton, who was diagnosed with PCOS about a year ago, experiencing the symptoms of the condition means staying away from work for several days. She told this newspaper that for her, being diagnosed with PCOS is a learning curve. She is still learning ways to manage the condition.
She recalled that before finding out that she was positive with PCOS, she bled for two weeks during the time of her menstrual cycle. The bleeding was accompanied by severe pain which made Stanton realize something was amiss since she had never experience that level of pain before. She recalled that it affected her ability to work or do any of her daily chores.
She shared: “That month I was in severe pain but I figured it was just me experiencing the blunt force of period cramps. After seven days passed and I was still in pain and was still bleeding, I started consulting with some of my close friends. This led to them recommending a doctor for me to speak with, and the doctor who made some recommendations.”
After undergoing a lower abdominal ultrasound, as recommended by the doctor, Stanton received her diagnosis. She has PCOS.
She recalled she had never even heard about the condition before but as she became aware of the effects of it, it became worrying to her. Stanton explained that when the doctor explained to her that PCOS can lead to infertility, it sent her into a state of depression.
But she soon did some research on the topic, changed her diet in a manner that would help her better manage the symptoms of PCOS. She said that reaching for support also helps through the process.
“Listening to other’s story gave me hope but it didn’t take away the random pain I would experience unexpectedly,” Stanton added.

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