PCOS, the Hidden Illness

This post goes into potentially TMI territory, but I really feel that there are so many women out there suffering with the same issues, and I can’t stay silent anymore.

For the past few years, I’ve lived a relatively normal life, save for the illness I was diagnosed with about 6 years ago.  Because my illness is relatively well-hidden, most people would never know anything was wrong. 

I have Polycystic Ovarian Syndrome (PCOS).  Some people close to me know the extent of how this illness has affected me, with physically visible issues such as male body hair growth, hair loss, and difficulty with my weight.  The non-visible issues I’m affected by include cysts on my ovaries, irregular/prolonged menstruation, cramping so severe that pain medication barely makes any difference, anxiety and depression. 

My daily grooming routine involves a lot of time spent removing excess hair from the visible parts of my body, like my face, legs and hands.  I no longer worry about the excess arm hair, as if I shaved that as well, I’d be shaving close to 95% of my body on a regular basis. I need some time to have a life, and not spend it all in my bathroom. I also spend a lot of time trying new volumizing shampoos, conditioners, styling products and tools, all in an attempt to make my thinning hair look healthier and thicker, or even grow back.  I even tried using clip in extensions a couple of years ago.  So far, nothing’s really worked for this issue. 

When I was first diagnosed with PCOS, I was going for 6 or more months at a time without a menstrual cycle.   I also weighed close to 250 pounds, which was quite heavy for my little 5’2” self.  After my diagnosis, I ended up moving into my first apartment, and with a strict diet and exercise, went down to 220 pounds.  This helped my cycles return, and for the past 5 or so years, I’ve maintained regular menstrual cycles every 22 days, with an average of 3 days of menstrual bleeding.  My weight has remained stuck at 220; regardless of the hikes, jogging, biking and walking I do. 

Fast forward to March of 2013 and I start my cycle, right on time, just as it’s been for the longest time.  Nothing seemed out of the ordinary until day 4, when I was still hemorrhaging and having to change my tampon every hour due to severe leakage and clots.  I called my doctor and was seen that day, given a relatively expensive prescription for tranexemic acid tablets, and orders for blood tests and an ultrasound.   Nothing seemed to stop the extremely heavy bleeding I was experiencing; until I finished the five day prescription.  Then, voila, it magically stopped... but only for 4 days.  I was given a second prescription for the same tablets, and was also given a follow-up appointment for 2 weeks later. This time, the tablets didn’t work.  By the time I had my follow-up appointment, I was on my period for almost an entire month.  Throughout all this, I missed many days of school and work due to extreme fatigue and the need to be near a bathroom at all times.

All my blood tests came back within normal ranges for my thyroid, and complete blood count.  My ultrasound showed I still had cysts on my ovaries, but nothing else was wrong.  The solution was to be a low-dose birth control pill, and I was advised it would take at least three months for everything to regulate to the 28 day cycle of the pill, but that it should help stop the bleeding.  I was sent for more blood tests to re-check my thyroid (TSH), ferritin and complete blood count since I’ve been so fatigued and cold.  Big surprise, everything came back normal again.

So far, during April, which was my first month on the active pills, I experienced nausea, cramps and extreme breast tenderness and experienced menstrual bleeding every day.  On the placebo week when I was supposed to have my period, I started to hemmorrage again, with very large clots.  It was bad enough for me to call Telehealth to speak with a nurse, who advised me to go to ER or an Urgent Care Centre for treatment.  I spent 4.5 hours in ER, had blood tests done (all normal ranges again), and was sent home with yet another prescription for the tranexemic acid tablets and a referral for a gynaecologist.   The tablets didn’t work, save for slowing down the hemorrhaging, and a one day reprieve from my bleeding.  I’m still waiting for the gynaecologist’s office to confirm my appointment... and I called a few days after my ER visit, as instructed if I hadn’t heard from them in 2 business days.  It’s now coming up to 2 weeks since I called the office and was told they were trying to figure out where to schedule me in with the doctor.  I’m not holding my breath for this to happen any time soon. 

During the second month of taking the birth control pills, I’ve continued to experience menstrual bleeding every day, severe cramps, nausea, and more breast tenderness.  Also, I no longer fit into my bras... 32 years old and my chest has grown again.  As I near the last of my active pills for this package, I’m very concerned that the extreme hemorrhaging and clots will start again when I start the placebos. 

I’m very discouraged by all this, and am angry that I’m being left to bleed for three, soon to be four months straight.  Throughout this entire ordeal, I’ve lost count of how much money I’ve had to spend on feminine hygiene products, pain killers and prescriptions.  Every tranexemic acid prescription was over $50 for just 30 tablets... not really affordable being a student and only working part time.  I’m also pretty depressed that I’m doing everything that’s been asked of me by my family doctor and by the ER doctor; yet nothing is working. 

I want my normal life back, where I feel vibrant and have energy to go out on 10K+ hikes with my dog, 20K+ bike rides and all the other fun things I used to do before getting ill in March.  Even playing my flute or other instruments tires me out very quickly, and it’s just so incredibly frustrating for me to not feel normal.   

Most days, I cry in the shower, and also before bed, feeling extremely sad and upset about my situation and how nothing is working to make me better.  Right now, I truly feel like I want my doctor to schedule a hysterectomy so I can return to my normal activities and not have to deal with this excessive bleeding issue anymore. Either that, or someone needs to kill me now, because I'm at my wit's end dealing with this insanity.