What is it like to have PCOS?
September is PCOS month and we were privileged to interview our former clients, Stephanie and have her give a first hand account of her experience with PCOS and pregnancy. Stephanie is a two time client at DPG and lives in MD with her husband and two beautiful girls.
Can you give us a brief explanation of what Polycystic ovary syndrome( PCOS) is?
Polycystic Ovarian Syndrome is hormonal disorder that can cause your ovaries to enlarge and develop cysts.
At what age were you diagnosed? Is this something you are born with or does it develop over time?
PCOS isn’t really understood. Many DR’s have told me it could be genetic or environmental, so I am not 100% sure if I was born with it or developed it by the time I was 16 years old.
When you were diagnosed were you exhibiting symptoms? What are some of the symptoms you could expect if you did have PCOS?
When I was diagnosed, I was already experiencing symptoms, but I thought they were period symptoms. I was constantly getting sharp stabbing pains in my pelvic area that would come in waves. I didn’t know any better and thought it was menstrual cramps. Other symptoms that I did have were excessive hair growth and higher testosterone levels but I thought that was because of genetics although the females in my family aren’t hairy and did not have PCOS. Lastly, I did have an irregular menstrual cycle and it wasn’t until I was about 21 years old the irregularities got worse.
How do they evaluate you for PCOS? Is this something that you had to reach out and ask for or did your doctor suggest it?
My evaluations as I remember consisted of an ultrasound, blood work and a physical exam. Because I was brought in to the emergency room the day I was diagnosed, they did find a ruptured cyst and other cysts as well on my ovaries. Apart from that, my right ovary had also twisted because of the size of the cysts which caused the pain and ended up with me in the ER. Immediately after I was told what it was and given a treatment plan to help with the development of cysts on my ovaries.
PCOS can be genetic, has anyone else in your family also been diagnosed?
I have asked around to see if anyone else in my family has PCOS or experienced any of the symptoms but it wasn’t until recently a maternal cousin of mine was diagnosed.
Can you name some of the symptoms you have experienced with having PCOS and are their treatments available?
My symptoms are excessive hair growth and irregular periods. There are many other symptoms as well that others have such as obesity, acne, infertility and depression to name a few.
We know that PCOS can become a major factor in infertility. Did you experience this on your journey to grow your family?
Unfortunately I did experience this. Right at the age of 16 the day of my diagnosis I was told I will most likely have issues TTC (trying to conceive). While my husband and I were trying, but not really trying we had a second opinion done and we had also researched some fertility centers in our area. It wasn’t until I was told to take prenatal pills/gummies and change of diet to help that I ended up pregnant almost 2 years later. With my second baby it was almost the same.
What extra steps, if any, did you have to take inorder to become pregnant?
While TTC I did change my diet a bit, for a while my husband and I weren’t eating meat and we limited dairy to only cheese. I’m not 100% if that did work or did anything at all, but physically it did make me feel better.
Did having PCOS affect you after conception?
After conception the only thing I noticed was that my hair growth had come to a halt. I was barely growing anything on my body, but my the hair on my head, WOW! The pregnancy did me great on that end :D
What to you has been the hardest part of this diagnosis?
The hardest part for me was being able to have a family. Since I was little I always dreamed of having my own family and being told that it was going to be difficult or possibly impossible hurt.
Is there something you have found easier than expected while navigating this journey?
Not really, everything is so unexpected with PCOS it’s just a rollercoaster. From periods, to hormone imbalances and mood swings, I am still learning to manage it all.
What has been the most helpful tool for you to manage your symptoms?
For my periods, I stopped taking birth control at 21 and cleaned my body from that as I noticed it was only making it worse for me and constant making me feel sick. Since then my period have been irregular, but trackable. Even when I was on birth control I wasn’t getting a period monthly, so to me it was just counterproductive.
What is one thing that you feel everyone should know about PCOS and do you have any words of wisdom for those who have just been diagnosed?
One thing everyone should know: For those who feel “off” notice irregular periods often please go to your doctor and ask for either an ultrasound or blood work. This can help detect what is going on and confirm or deny the diagnosis.
Words of wisdom: PCOS can be tough, but you are tougher. Find a group with PCOS Cysters and ask questions, share your journey. Together we can overcome anything.
