The Perils Of Being A Patient With PCOS

The Perils Of Being A Patient With PCOS

Imagine a doctor tells you that there is something wrong with your body.  The doctor proceeds to share with you that the problem you have is genetic, there is no cure, and he has no idea how to really help you.  What he knows he read about in a paragraph on his own in one of his medical books.  He also tells you  that you may never have the opportunity to have children.  You MAY be able to ease some of your symptoms with weight loss… or at least that’s what he heard in passing.  He then proceeds to mention that he read an article that says weight loss may be difficult.  You end the visit with “but you’re young, you don’t have to worry about children for a while.  There are methods that can help you.”  Thus ends your visit.  Imagine you are 18 years old when you are told this.  Eighteen.  So you walk on your merry way without a care because, well, “there are methods that can help you.”  At this point in your life, weight isn’t an issue so why even give this any mind.  Besides, he didn’t tell you that YOU HAD to lose weight.  He didn’t tell me HOW either.  So I was given a prescription for birth control to help control the symptoms.

The fact of the matter is, I have known since my third visit to the OBGYN office at 18 years old that I had PCOS.  I am now 39 years old.  Unless I specifically address PCOS to my doctors, whether it be my OBGYN or regular family practitioner, it is never addressed.  I had it addressed twice in my lifetime… both times when I was looking to have a baby.  Both times I was told my best chance at having a baby was losing weight and taking drugs to help my body get pregnant.  Was I told HOW to lose the weight this time?  Nope.  So I chug along, going to the gym or working out at home regularly.  I am now 23.  At this point in my life I am a certified health teacher.  I teach nutrition.  I know how to eat properly.  I know how to eat healthy.  I practice it.  I am also a certified physical education teacher and coach.  I know how the body works.  I know how to train.  I know how to build muscle properly. I set up a program and I workout 3-4x a week and fix my food.  After 6 months, I’ve lost 5 lbs.  No, that’s not a typo.  It was five lbs.  We visit a fertility specialist around this time. They suggest low carb as we continue our journey to become parents.  Atkins is hot at the time so hey, let’s do it.  Two months of Aktins, 10lbs down.  Still slow, but it works.  What didn’t?  I felt lethargic.  I couldn’t sustain the diet.  As the internet grows I finally find something to help.  It’s a book on how to eat for PCOS .  One book on Amazon.  Just one.  Apparently the secret is eating low glycemic index foods.  Bam!  Instant weight loss.  My hormones finally level out.  I get pregnant.  I now know the secret as we tried for baby two.  I lost the baby weight and although we still needed a little help, I was still able to get pregnant.  After pregnancy, doctors never did a full workup for PCOS.  Never.  After baby two, I was persistent about my weight loss.  I learned on my own how my body worked.  I ate better.  I was a workout hound.  I signed on with a trainer to keep me going and to mix things up.  We had a solid year together.  I felt awesome.  I dropped close to 65 lbs.  I was in heaven.  For once, I felt good about my body.  I didn’t feel tired.  I felt fueled.  I felt alive.  I was ready to tackle the world.  Baby 3 happens.  I do as much as I can but I don’t overdue it during that pregnancy.  I was in pain.  I couldn’t walk well.  Around month 7 I had a shooting knifelike pain right up the center of my pelvis anytime I walked.  I couldn’t sit up in bed without rolling over.  I couldn’t sit down for more than 15-20 minutes without being extremely uncomfortable.  I was told that the pain would subside after the baby was born.  It did, kind of. You see, I was adamant about keeping my health in check now.  Since I have rarely found support in the medical field, I do feel alone.  I feel like I have to be my own advocate.  I have to speak up.  So at 8 weeks, I was cleared to exercise and I did immediately.  Day one was my 38th birthday.  A month later I was with my trainer again and raring to go.  Except, the problem was my body just wasn’t the same.

For the next year and a half I struggled to lose 15 lbs.  I worked hand in hand with a nurse practitioner to try to figure out WHY anything and everything I did the last time didn’t work.  Blood tests show everything is fine. Glucose levels were great.  Thyroid is fine.  In fact, as dumb as it sounds I would hope that it showed something wrong because then I would know where to start.  The frustration was unbearable. Another issue I faced was anytime I lifted my leg, that shooting pain returned.  It lasted about 4 months in the beginning and finally started to subside.  I thought the problem had solved itself and it was just my body readjusting to no being pregnant.  So here we are about a year later and the pain has returned.  I spoke with a nurse practitioner at my doctor’s office and told her that after some research of my own I believed it was something called Symphysis Pubis Dysfunction, which sometimes is referred to as Pelvic Girdle Dysfunction.  She was so very honest and said she didn’t know much about it but knew how important it was to me it was to fix it.  She has been at my side for the past year and a half and has diligently worked with me through my postpartum blood pressure issues, hormonal imbalances, and anxiety.  It’s been  the first time in my life I felt supported.  I was sent for x-rays but I had an appointment with my OBGYN soon and she thought that it would be a good idea to mention it to them, too.  So four days later I did.  My old OBGYN had left the practice and I was meeting someone new.  I mentioned my issue.  I told her all my symptoms.  She did an ultrasound and an internal exam.  I told her how important it was to me to fix this problem…. how I believed that I may have even had an indication that this may have occurred with my second pregnancy and during the third it became more severe.  I knew she read my file but I mentioned at this point,

“listen, I have PCOS.  I’m a very active person.  I’m having difficulty losing weight.  This problem is impeding on my progress.”

Then it happened.  I got this look that hit me to the core.  “…but what are you really doing?  How are you eating?  Are you doing enough?”

It hit me hard.  It hit me so hard.  I’m screaming inside my own head ,

“Yes, I do enough.  I do more than enough.  I examine every meal.  I lift heavy shit.  I run.  I share my progress online with hundreds of people.  I have a B.S. in Physical Education.  I have a  M.S. in Health Education.  I have educated myself on what to do with PCOS.  I work with a trainer.  I cry to my husband and my best friends about the stress, frustration and difficulty of living with this disorder….  HELL YES!  I DO ENOUGH!”

…but all I could think to politely say is “yes, I eat clean, I exercise several days a week.  I’m getting certified as a personal trainer this fall.”  Then I felt I had to add, “It hurts when I run.  I ran a 5k this past Wednesday and the week before that.”

Regardless of what the rest of the diagnosis by this doctor was by this point, she had lost me.  No patient should ever have to defend themselves like that.  It’s just wrong.  I sit and wonder if I wasn’t 239lbs when I walked into that office would I have been treated the same way.  I would love to say no, but I’m not sure if it is true.  A practice that I’ve been going to for almost 20 years lost a patient.

I’ve heard many stories from women with PCOS who have had similar experiences. I have seen many of us struggle to lose weight.  Just this morning I read about another program to help us lose weight.  The words that set me off… “women with PCOS aren’t motivated because they are SO worn out from their relentless symptoms.”  I was told by the author that those weren’t his words.  He would correct them.  Then why post it?  I believe that women with PCOS are the most motivated people I know.  We have struggled with many doctors who are just as unsure as we are on how to treat PCOS.  It’s an interesting ailment as no one woman has all the same symptoms.  There is no solution here except to advocate for ourselves.  If you are a woman with PCOS, make your voice heard.  If you have family member or friend with PCOS, support them anyway you can.  Don’t try to push us to lose weight through, diets, teas, shakes, etc.  Help us to maintain a healthy sustainable lifestyle through proper nutrition and exercise.   PCOS can affect us mentally and physically.  There needs to be more research done to help us all.  Keep chugging along, my loves.  I have your back and will continue to share my voice for those of you that can’t.

 

2 thoughts on “The Perils Of Being A Patient With PCOS

  1. So you know I think you are amazing. I think you are strong and thoughtful and kind and funny :). All round pretty awesome!!! Thanks for sharing this. My experience is different but lack of support from the medical field is the same. Reading this makes me feel less alone. Reading this makes me feel like I can be the warrior you are. Reading this gives me hope!

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