My PCOS Journey
Shannon Jones
This book is dedicated to all women who have been diagnosed with PCOS.
Shannon Jones
Table of Contents
06
Introduction
08
What is PCOS?
10
How Does PCOS Affect The Body?
12
My Diagnosis
14
How I’m Living With PCOS
16
Glossary
19
Bibliography
20
Tell Us Your Journey
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o cti du
tro In
When I was in the 11th grade I was diagnosed with
Polycystic Ovarian Syndrome (PCOS). At the time of my diagnosis my then doctor did not make a big deal of the syndrome so I brushed the diagnosis under the rug and did not acknowledge it. It wasn’t until I was a sophomore in college that I realized PCOS was truly affecting my life and day-to-day activities. PCOS is a syndrome that can affect your menstrual cycle, fertility, hormones, and your appearance. Although doctors do not know the cause of PCOS many doctors believe that an underlying hormonal imbalance has to do with the progression of PCOS. When I began doing research on PCOS in high school I noticed that many of the sources had conicting information and all the information was coming from doctors or medical institutions. I found only 2 sources of information on PCOS from women with PCOS; I have created this booklet to change this lack of representation. It is my goal to explain PCOS from the point of view of someone who has it. I want to share my story and reach out to other women who have PCOS.
What Is PCOS? P
COS or Polycystic Ovarian Syndrome is a hormonal disorder that affects more than 200,000 women per year. PCOS affects a woman’s endocrine system, specifically the ovaries. PCOS causes a hormonal imbalance in women. This means that women with PCOS have an elevated androgen level. The elevated hormone level causes irregular periods. When eggs are not released regularly through menstruation, the unreleased eggs form into cyst on the ovaries leading to the name of the syndrome, Polycystic Ovarian Syndrome. PCOS is the leading cause of infertility in women. This is a result of anovulation, the lack of ovulation, or missing periods for over three months. PCOS can have an affect on a women’s physical appearance. Most of the changes in a women’s physical appearance are due to the elevated androgen level associated with PCOS. These changes consist of acne, male patterned hair growth, weight gain, and hair thinning. Women with PCOS also have a higher risk of developing other health issues such as diabetes. This is due to insulin resistance, which is an attribute of PCOS. Doctors are not sure of the cause of PCOS. Many doctors believe PCOS may be hereditary but there is not enough evidence to make the conclusion. Women with family members who have PCOS are more likely to develop PCOS in their lifetime.
How Does PCOS Affect The Body?
Thinning Hair Acne Prone, Oily Skin
Excessive Male-Patterned Hair Growth Thick, Dark Patches of Skin on Arms, Neck, Breast, or Thighs
Weight Gain
How Does PCOS Affect The Body?
Cyst On Ovaries
Irregular Cycles
PCOS is an endocrine disorder that affects over 7 million women. That’s more than the number of people diagnosed with breast cancer, rheumatoid artritis, multiple sclerosis, and lupus combined. -Louise Chang,MD
My Diagnosis
I remember the day I was diagnosed just like it was yester-
day. It was the summer right before 11th grade. I had been experiencing irregular periods. It had been about 3 months since I had a period. My mother urged me to visit my primary care doctor. While in the doctors’ office, my doctor asked me a series of questions as well as had me take a pregnancy test. I was for sure I was not pregnant, but it was a standard precaution for patients who came into the office because of missed periods. During my visit the doctor suggested I get a sonogram to offer a better look at my ovaries and what may have been causing my absent periods as well as visit an endocrinologist. An Endocrinologist is a doctor that specializes in diagnosing diseases that affect your glands. Since ovaries are considered a gland it was thought that an endocrinologist would be best to help me get to the bottom of what was going on. When I went in to visit the endocrinologist, I did not know what to expect. My only hope was that the endocrinologist would be able to determine what was wrong. When I went into the doctor’s office he asked me a series of questions. “Are your cycles irregular?” “Are you experiencing an increase in facial or body hair growth?” I was not sure where he was going with all of the questions. When the appointment started to come to an end, the endocrinologist then said, “I believe you have PCOS”. I had never heard of PCOS before. I didn’t know what it was or how it would affect my body. Now looking back on the situation, I believe I was in denial that I could have any sort of medical condition. I didn’t ask the doctor any questions and he didn’t offer much information. The endocrinologist was very nonchalant about the appointment and the diagnosis. I took his nonchalant attitude to mean PCOS wasn’t a big deal. My mother researched the diagnosis and printed out a lot of information from medical websites, but I refused to read them all. It wasn’t until I was a sophomore in college for me to come to grips that PCOS was causing severe changes to my body and that I must take my health more seriously.
How I am Living With PCOS
When I was initially diagnosed with PCOS, I was pre-
scribed Metformin. Metformin is an anti-diabetic medication. Women with PCOS are prescribed metformin to help combat the insulin resistance associated with PCOS. I remember the first time I took metformin. The label on the prescription bottle suggested taking the pill with food, but I ignored the suggestion. Metformin is a strong medication that can cause stomach ulcers if not taken with food. The stomach pain was unbearable. I remember being in class with strong stomach pains but not wanting to show I was in pain because I didn’t want to admit I had PCOS. This day lead to me refusing to take metformin for the next 2 years. PCOS has had an impact on the way my body functions. The most memorable impact was in 2015. I had gone 7 months without a period. I knew I had to do something. I looked into going to a gynecologist, but I was scared. I had never gone to a gynecologist before. I wasn’t sure what to expect. During the visit my gynecologist prescribed Provera, a medication to help kick start my period. She then prescribed birth control pills to help regulate my period. I had to try several different birth control pills before the gynecologist found one that worked for me. Before I was prescribed birth control, I thought all birth control pills were the same.
It wasn’t until I had to take birth control pills that I learned different pills have different dosages and affect the body in different ways. The process to find the right birth control was a long and daunting process. The first birth control pill I tried wasn’t the correct dosage for me. Instead of regulating my periods it elongated my periods. While on my first birth control pill, my period lasted for over 2 months. This experience was emotionally draining. I knew something was wrong with my body. I knew the changes were due to PCOS but I didn’t know what to do to make my body normal again. Now that I have found the proper medications, and the right gynecologist, I am learning how to make adjustments in my life to accommodate PCOS. Just when I thought PCOS was an end it became a new beginning. My journey with PCOS has taught me resilience and perseverance. PCOS is something I have to live with but it does not have to consume my life. PCOS has also taught me transparency. I have spent years denying that I have PCOS. I now embrace this aspect of my life and refer to it as a testament to my strength and will to persevere.
Glossary ANDROGEN- any steroid hormone that promotes male secondary sex characters. The two main androgens are aldosterone and testosterone. Androgens are produced by the adrenal glands in both sexes, as well as by the ovaries in women. Thus women normally have a small percentage of male hormones, in the same way that men’s bodies contain some female sex hormones. ANOVULATION- a condition in which the ovary does not release a ripened egg each month as part of a woman’s normal cycle in her reproductive years. Naturally, with no egg available for sperm, a woman cannot become pregnant. Thus, anovulation is a prime factor in infertility. ENDOCRINE SYSTEM- the collection of glands that produce hormones that regulate metabolism, growth and development, tissue function, sexual function, reproduction, sleep, and mood, among other things. ENDOCRINOLOGISTS- specially trained physicians who diagnose diseases related to the glands. The diseases they are trained to treat often affect other parts of the body beyond glands. While primary care doctors know a lot about the human body, for diseases and conditions directly related to glands they will usually send a patient to an endocrinologist.
GYNECOLOGIST-a physician or surgeon qualified to practice gynecology.
INFERTILITY- not getting pregnant despite having carefully timed, unprotected sex for one year.
MENSTRUATION- often referred to as a period, is normal vaginal bleeding that occurs as part of a woman’s monthly cycle. Every month, a women’s body prepares for pregnancy. If no pregnancy occurs, the uterus, or womb, sheds its lining. The menstrual blood is partly blood and partly tissue from inside the uterus. It passes out of the body through the vagina.
METFORMIN- an oral diabetes medicine that helps control blood sugar levels. Metformin is used to improve blood sugar control in people with type 2 diabetes. It is sometimes used in combination with insulin or other medications, but this medicine is not for treating type 1 diabetes. Metformin may also be used for purposes not listed. OVULATION- when a mature egg is released from the ovary, pushed down the fallopian tube, and is made available to be fertilized.
PROVERA- a form of the female hormone progesterone used to treat secondary amenorrhea; abnormal bleeding from the uterus due to hormonal imbalance.
“7 Things You Need To Know About Polycystic Ovary Syndrome.” Prevention. N.p., 19 Dec. 2016. Web. 08 Apr. 2017. “Androgen.” The Free Dictionary. Farlex, n.d. Web. 06 Apr. 2017. “Anovulation.” @healthcentral. N.p., n.d. Web. 07 Apr. 2017. “Common Side Effects of Provera (Medroxyprogesterone Acetate Tablets) Drug Center.” RxList. N.p., n.d. Web. 07 Apr. 2017. “Infertility.” Https://www.gstatic.com/healthricherkp/pdf/infertility.pdf. N.p., n.d. Web. 6 Apr. 2017. “Menstruation | Period | MedlinePlus.” MedlinePlus Trusted Health Information for You. N.p., n.d. Web. 06 Apr. 2017.
Bibliography
“Metformin: Uses, Dosage, Side Effects.” Drugs.com. Drugs.com, n.d. Web. 07 Apr. 2017. “Ovulation - Understanding Ovulation Cycles.” American Pregnancy Association. N.p., 09 Oct. 2016. Web. 07 Apr. 2017. Parker, Sydney. “When Missed Periods Are a Metabolic Problem.” The Atlantic. Atlantic Media Company, 26 June 2015. Web. 08 Apr. 2017. “PCOS Overview.” PCOS Awareness Association. N.p., n.d. Web. 06 Apr. 2017. “Polycystic Ovary Syndrome - National Library of Medicine PubMed Health.” National Center for Biotechnology Information. U.S. National Library of Medicine, n.d. Web. 08 Apr. 2017. “What is an Endocrinologist?” Hormone Health Network. N.p., n.d. Web. 07 Apr. 2017. Zimmermann, Kim Ann. “Endocrine System: Facts, Functions and Diseases.” LiveScience. Purch, 11 Mar. 2016. Web. 06 Apr. 2017.
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