In our continued series on Polycystic Ovarian Syndrome (PCOS), former Eco Femme volunteer, Kelsey shares her story on living with and managing this condition. We thank her for sharing her journey, wish her well and send our love!
If you think you may have Polycystic Ovarian Syndrom, we strongly advise contacting your medical practitioner.
As a now 20 year old woman, I am feeling so blessed to be more in touch with my cycle and with my body generally. About 6 months ago I was diagnosed with Polycystic Ovarian Syndrome (PCOS), though it has been difficult, I am happy to say this diagnosis has really helped me find peace with my body. The story of my menstruation journey is a long and emotional one.
“My menstrual cycle has never been regular, and as a young girl you are told that this is normal, and that it takes a few years to regulate. As I entered my mid-teenage years, it was recommended I go on birth control pills in order to regulate my erratic cycle.”
In the summer of 2014, after having terrible experiences with hormonal birth control, I was fitted with a copper IUD. Though this process was painful, having a method that was long term, really reliable, and hormone free was a huge source of empowerment for me. I had control over my body and I barely even had to think about it. After a year or so, I was experiencing constant spotting and cramping. I had seen an increase in my weight and facial hair symptoms. My doctor immediately associated this with my IUD, or the infection I had treated travelling in North Eastern India. Not much was offered to me in the way of controlling the bleeding or the pain. Hormonal tests were done, and were inconclusive. I was left on my own to handle these symptoms, which often times felt like they controlled my life. This went on and off for so long. As I entered my first year of college, I went on a beautiful hiking trip meant to introduce me to new people, and get ready for this new phase of life. This trip, sadly, was shadowed by bleeding that wouldn’t let up. When we returned to school, I went to my empty dorm room and cried feeling hopeless and disappointed with my body. My roommate who I had just met, gently encouraged me to make an appointment at the Bennington Planned Parenthood. She assured my I didn’t have to deal with this constantly.
“I had subjected myself to the cramping that unexpectedly hit me in class, at parties, in many moments I was supposed to be enjoying.”
I walked into the Planned Parenthood the same as I have walked into many doctors offices before. I was feeling like it would go exactly the same way, my expectations were very low. I wasn’t sure what could be different than the last inconclusive times. To my surprise, not only was I supported in a way I had never felt in any medical system, I also got answers. My nurse practioner had put the pieces together in a way my gynecologist at home couldn’t seem to do. She laid things out for me in an honest and gentle way. She ran tests, gave me physical exams, and most importantly, gave me options. It was a very vulnerable time for me, and I cried in her office more than once. Tears of fear, and also of relief that someone was finally helping me. Being the person I am, very independent, it was and is hard for me to accept help sometimes.
It was suspected I had Polycystic Ovarian Syndrome (PCOS), a very common disorder. It affects hormone levels and leads to a variety of menstrual problems, so it was believed to be the cause of my bleeding and cramping. There are some messy, long term issues such as trouble getting pregnant and problems with insulin. Many other immediate symptoms accompany PCOS such as excessive facial and body hair- all of these the last thing on earth a young woman wants to deal with. This diagnosis was later confirmed by an ultrasound, and blood tests. The cause is unknown, though it is likely partially genetic and weight related.
At first, this diagnosis of PCOS was deeply upsetting for me. I spent many weeks in a fog, completely emotionally distraught. I was in the thralls of my first semester of college, dealing with classes, family, new friends, crushes, and the fraying of old relationships. It all seemed like too much. I wished I wasn’t dealing with any of it. Soon, I started to realize that this diagnosis was empowering. My PCOS could be treated in many ways. I could take anti-androgens for the symptoms, and hormonal birth control pills to stop the bleeding. I could make an effort to lose weight and be healthier. I got my IUD removed, started taking pills, and my bleeding immediately stopped. I started going to the gym almost daily, mostly as a stress relief. I felt strong and lucky to know what was happening to my body. I asked the nurse who did my ultrasound to print out a picture of my ovaries and I hung it on my wall, happy to be able to have a visual element to something that has caused me so much pain.
It has now been about 6 months of taking hormonal birth control and an anti-androgen medication called Spironolactone. I have been lucky enough to not experience any of the negative symptoms associated with these medications. The future path for my PCOS is unclear to me. I have visited a hormonal specialist to rule out other causes of my hormonal imbalance, including thyroid issues and androgen producing tumors. At the time, I was struggling with wanting to stop taking synthetic hormones, and eventually I will stop. I was reassured by many that taking these pills is the best thing I could do to prevent my symptoms from coming back. I am doing many other things to support my body alongside these methods. I have become vegetarian, and I am eating very little dairy. I frequently take powdered shatavari and will receive acupuncture.
Thanks to volunteering at Eco Femme, my interest in the phases of the menstrual cycle was sparked, and I track my feelings and cycle daily. Most importantly, I have made an effort to take care of my whole body and I have been losing weight consistently. This helps regulate your hormonal system, and I can absolutely see the difference. I feel much stronger and healthier, and very proud of myself.
Thank you for your words of wisdom. I am 27 and was diagnosed with PCOS today. I thought that might have been the issue, but it’s overwhelming to have it confirmed. I also was told my bleeding was due to my copper iud 2 years ago. I have been to the doctor countless times and not listened to. I was losing hope that I’d ever gain control of my body (ive had irregular periods since 2006). I feel so emotional—happy, sad, angry, relieved to have answers. I hope you are doing well and know you’ve made a difference in someone’s life ❤️.
Thank you for sharing. We wish you well on your journey. xx
Unfortunately, there is no cure for PCOS. But you can manage the symptoms of PCOS!! and you’re coping the best, I’m sure. You and your doctor will work on a treatment plan based on your symptoms, your plans for having children. it’s advisable to maintain a healthy weight for the one with PCOS.Weight loss is known to be capable of reducing insulin and androgen levels. And this in its turn may restore ovulation. It’s always better to have a good consultation with a doctor about a weight-control program. One can also meet with a dietitian for help in reaching weight-loss goals on regular basis. Low-fat, high-carbohydrate diets might increase insulin levels, so it’s also crusial to ask a dr about it. I’m into PCOS issues myself. Our only solution was passing IVF, but had to look for more affordable options.
I feel enormous sorrow for women like me, facing PCOS. Most of us find out we have it in 20-30s, when we have problems getting pregnant and see a doctor. That’s frustrating, but PCOS can happen at any age after puberty! It’s also known the risk of PCOS may be higher if you have obesity or if you have a mother, sister, or aunt with PCOS. At the same time, having PCOS does not mean you can’t get pregnant!! PCOS is one of the most common, but treatable!! causes of infertility in women. I myself turned to IVF abroad to conceive my baby.
May god help you on your way.
Hi, I also have PCOS so I get how difficult it can be!, for me has been really helpful the knowledge from smartfertilitychoices by Kym Campbell and thepcosnutricionist by Clare Goodwing. Hormonal birth control methods are just a band-aid solution, it’s really important that each woman with PCOS can learn what’s best for her body, but definitely diet and lifestyle (sleep, stress management and exercise) are the key element. Also, be careful with being vegetarian because protein is really important for us.
hoping the best for your journey!
Dear Pamela, thank you for sharing your inputs:)