Sunday, June 12, 2011

A Letter to Medical Professionals

Dear medical community,

Hello!  How are you?  I hope you're well.  Because I'm a bit pissed off at you.  Don't worry, I'll explain in detail.

When I was fourteen years old, I woke up on Rosh Hashanah with an impressively horrible stabbing pain in my abdomen.  My brother thought my appendix was bursting, but I had no other symptoms besides the worst pain in my life.  By the time I could get to the doctor's office, the pain had subsided.  A couple of weeks later, on my fifteenth birthday, I sat in the waiting room again, needing to pee, waiting to have an ultrasound.  There was a medium sized cyst on my ovary, on the other side, making it highly probable that the pain I had was from another cyst on the other ovary rupturing.

I saw a pediatric endocrinologist after that.  She was one of the more respected doctors in the field, and is still one of the more prominent endocrinologists at Children's Hospital in Boston.  I hate her, eight years later.  She diagnosed me with Poly-Cystic Ovaian Syndrome (PCOS), a hormonal imbalance that would explain the cysts, as well as the fact that in 3 years, I had only had my period about 10 times.  She decided that she wanted to check and see if she could feel any additional cysts.  Without telling me what she was going to do, she performed a pelvic exam.  When I was in pain, she told me that "it shouldn't hurt," when clearly it did.  I was so upset afterwards that I cried and couldn't concentrate when I got back to school later that day.  When I told my mom what happened, she was furious.  I was only fifteen; I had not been asked for my consent to have this exam, I was not even told it would be happening until it had already started, and it was incredibly painful.  I regret that my mom and I didn't file a complaint with Children's.

She and my pediatrician scared me into going onto the pill when I was sixteen, since that was the "treatment" for PCOS.  When I asked the simple question, "If I don't go on the pill, will that affect my fertility in 15 years?" they answered non-committally, and told me that, "If we don't take care of this problem, then you might have a lot of trouble conceiving."  I explained that I didn't want to go on it, that I felt like it would make me MORE likely to have sex before I was really ready, but they both ignored me.  I finally caved to the pressure about six months later, and was incredibly ashamed to be on the pill.  Even now, when I mention that I've been on the pill since I was sixteen, the reaction is very negative; a lot of people assume that I was already having sex very early, or at least expecting to have sex so early.

It took me a while to find a pill that worked for me.  The first two gave me severe morning sickness, which I hadn't been warned about when my doctors put me on it.  I would miss class in the morning every month, like clockwork.  I finally switched to Yasmin after a few months and had no problems.

Being on the pill did have benefits.  While I didn't love having my period every single month, it was nice to know when it was coming.  My cramps became less severe, my flow was much lighter, and each period only lasted four days, instead of six or seven.  It cleared up my acne a bit, and when it didn't clear up all of it, it let me go right back onto Accutane; I didn't have to start birth control and wait a month before I could start the acne medication.

But one thing became very obvious.  My breasts, which had been a slightly large B since I finished puberty, ballooned up to a large C.  And I started gaining weight.

Since I'd hit puberty, my mom had fretted hardcore over my weight, since I weighed more than she did.  But I was super healthy; 130lbs, 5'5".  Not skinny, but certainly not overweight.  Very, very normal.  When I started the pill, I was about 140.

By the end of high school, I was at 180.  Now, I'm struggling to stay below 195.

I've done Weight Watchers three times.  I've dieted and counted calories endlessly.  I've tried working out more.  And even regular lifestyle changes made no difference.  I would eat only as much as my slim friends, often less, and I'd gain.  I would walk and take the stairs significantly more.  No change.  Last year, I would walk about 3 miles a day just to get to and from work.  I gained weight.

My mom was in the camp of, "You must be doing something wrong."  If I was dieting, I was either cheating, or I needed to exercise.  If I was exercising, it was because I must be overeating afterwards as a reward.  But it was obvious that something was keeping me from actually losing weight.

My doctors insisted that it was PCOS that was keeping me heavy, and I just needed to try harder, since I was at risk for type 2 diabetes.  But I have a life.  I have other things I want to be doing other than obsessing over my weight.  And that was really the only problem; my blood tests were always fabulous, and I wasn't even close to being really at risk for diabetes.

All of them denied that the pill was causing the weight to come on and stay on.  Every last one of them.  For eight years.  Never mind that I gained 50 lbs.  Never mind that my breasts grew.  And, more importantly, never mind that almost every woman I know who has gone on the pill has gained weight.  I know so many women on the pill, or other hormonal birth control, that I've lost count.  It's the majority of my female friends, and plenty of acquaintances.  Only two of them haven't noticed any weight gain or breast growth.  Clearly, something's happening, and it's not just "water retention."

I went off the pill on May 31st in preparation for surgery.  I haven't been exercising lately (beyond walking to and from the T, and clubbing with friends), and while I haven't been eating ridiculously unhealthily, I haven't been making an effort to eat well.  When I went to Planned Parenthood on the 27th, I weighed 196 lbs, 5 lbs more than I did at the beginning of the month.

Today, I weigh 188 lbs.  I have been off the pill for almost two weeks.

So, medical community, here's my advice for you.  Stop lying.  Really, that's it.  Be honest with your patients.  That means:

Don't tell them that the pill is necessary for treating PCOS.  It's not.  When I got older, I did my research.

When your patient is deciding to forgo treatment, that is their right.  Don't pressure them.

The pill causes breast growth and weight gain.  Stop saying it doesn't.  I didn't gain 50lbs of water weight.

Do not perform a pelvic exam on a patient without informed consent.  It doesn't matter how necessary it is.  Otherwise, you will violate them.

I hope we've learned something here today.  Because if I keep losing weight now that I'm off the pill, you can be sure that I will never go back on hormonal birth control.  I've worked very, very hard to love my body as it is, and I've dealt with discrimination, nasty remarks from people who love me, stressful shopping trips, and the overwhelming number of negative feelings that fat people deal with in a thin-privileged society.  I have spent eight years fighting and wishing and trying very hard to love myself while knowing that other people hate my body.  If I find out that this all could have been avoided by having better doctors, you can be sure I'll never go back on the pill.  And I will be making a stink about this.



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